Category Archives: My chronic career

My chronic career – Teresa’s story

‘My Chronic Career’ is a (often) weekly feature here at WorkLifeSpirit, featuring interviews with people who have chronic health problems. The interviews focussing on not just their medical experience, but also the impact of their health on their life and career.

Teresa from Norfolk in the UK has agreed to be interviewed. Thanks Teresa!

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your medical history?

I have been diagnosed with Crohn’s disease in May 2005. It was thought I had appendicitis , but had an operation and they saw the Crohn’s. I then had another operation two weeks later as the medication wasn’t working. I then got peritonitis and nearly died, and so they gave me an ileostomy for a few months which was reversed in November 2005.
I was then diagnosed with arthritis and fibromyalgia. I had two operations on my elbows. I then had issues with adhesions and have had 3 further operations to try and get them to settle, but they haven’t, and so even now I am being treated.
I am on Methotrexate for the arthritis, having tried MP3 and Mercaptopurine, which didn’t work. I was on steroids for a long time and put on a lot of weight which made me feel terrible and so took antidepressants.
My last operation was November 2010 there were adhesions again, but this time it made it worse rather than better, and now I am being treated and looked at with St.Marks Hospital where I have been referred to as they are more specialist than my local hospital. I am tired all the time, and I suffer with fatigue a lot and am on a lot of opiate pain killers.

And how about your working life? What career path have you taken?

Although I was off for a while, I have been a police officer for nearly 15 years, and am now on a back to work recovery programme and now working full time hours.

Did you know about your condition before you were diagnosed?

Nope, no clue at all.

How did you find out further information about your condition when you were diagnosed?

I looked on the internet as staff at the hospital

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

I find the National Association of Crohn’s and colitis to be helpful. I also have a couple of books on the disease, and also look on crohnszone.org for information as well as other friends who have the disease.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

The fatigue is the biggest issue for me, and where the nearest toilet is!

What is your top tip for employers – what could they do to support people with your condition?

They need to be empathetic in relation to your working space, and also where the nearest facilities
are.

What is your top tip for employers with your condition?

You are covered under the DDA and so if there is something that is troubling you then you do have the support of the disability discrimination act.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

I am normally in bed early with a hot water bottle and my medication.

Do you think you have developed any personal skills or qualities as a result of having your condition? 

I have developed more skills in finding the toilets, how to ask and explain in places when toilets aren’t public, to ask where they are.

What advice would you give people who have just been diagnosed with your condition?

I would suggest that you look at the DDA to see what your entitlements are, and also, find out where the facilities are at your place of work.

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

It is not that bad – there are going to be some bad days, and there are going to be some good days, some bad. Don’t wait around for the bad ones and make the most of the good ones.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

Advertisements

My Chronic Career Jason and Crohn’s Disease

‘My Chronic Career’ is a sometimes weekly feature at Worklifespirit which presents interviews with people who have chronic health problems. The interviews focus on not just an individual’s medical experience, but also the impact on their life and career.

Jason Peters  from Shrewsbury, Shropshire has kindly agreed to be interviewed. Thanks Jason!

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your Coeliac history?

I was diagnosed in 1997. I had been diagnosed in 1996 with ankylosing spondilitis, after many years of physio, back specialists had prodded and poked me. The drugs given to me for my back reacted very badly with my as yet undiagnosed Crohn’s. I was very ill for 12 months, while they tried to work
out why I was so ill. It was only when a fistula appeared that I was finally diagnosed. I have been very lucky, as this has been the only operation I have required to date.

And how about your working life? What career path have you taken?

I am an electronic engineer by trade, although in my later years I have moved into a more supervisory role. I began my working career at Shrewsbury technology, a fantastic place to learn and have some life long friends from there.
I continued to play Rugby for a local team before and after I was diagnosed.
From Shrewsbury Technology I moved through a number of jobs, working at smaller companies. Other than when I had my operation, I tend to struggle through my flare ups, and only have had a handful of days off. I enjoy my work, and I’m not one to sit there and feel sorry for my self, so I push myself forward.

Did you know about your condition before you were diagnosed?

Yes, My cousin had it very acutely so was aware of the impact it could cause.

How did you find out further information about your condition when you were diagnosed?

My cousin who has the disease is also a nurse and a font of knowledge on the disease, I was very lucky, she gave me all the facts and knowledge I have needed really – she is a star!

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

Again, I don’t tend to bother with the internet. You can read such conflicting information. I just concentrate on what is right for me.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

Situations involving food – e.g. Professional development courses with lunch included – usually sandwich based which is not suitable for anyone following a gluten free diet. I always take my own lunch along to this type of event nowadays and do my best not to feel awkward about tucking into my own homemade snack while others linger around the buffet table!The most difficult thing I find is when you are in a flare up, I get a lot of joint swelling and am constantly tired. When I have a flare up I tend to push myself hard to keep going. With my Ankylosing Spodylitis Staying in bed is not helpful, and as both diseases trigger each other, it’s a case of just doing your best.
I have to say all my employers have been very supportive, I try to be as honest and open about my illness wish helps them understand what I need to do to help them get the best from me.

What is your top tip for employers – what could they do to support people with your condition?

Listen to what your employee is saying to you, Most people I have met with any kind of illness just want to be treated like everyone else. They work hard when they are well, and just need the reassurance from there employer that intermittent days off will be seen as isolated incidents and a long term view is taken.

What is your top tip for employees with your condition?

As an employee, I really just try to do my best, Even if I’m only feeling 50% I tend to go in, I’m of the opinion that I have this for disease for life, and it’s a battle, so I don’t let it get the better of me with out a fight.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

When I feel the beginnings of a flare up I go on to a white diet, it means you eat things with low fibre, easy to digest e.g. white bread, not brown, white rice, chicken etc. I also cut out caffeine and citrus fruit juices. It all helps to let your intestine have a rest, and seems to work for me. My cousin told me about it, and since then it has really settled my condition down and reduces the length of a
flare up. I also think it lets me feel I am doing something!

Do you think you have developed any personal skills or qualities as a result of having your condition? 

The disease has made me a more open and honest person. I don’t worry or get embarrassed about talking about my disease.

What advice would you give people who have just been diagnosed with your condition?

I would say you need to get as much information as possible, not all will work, but it takes time to find out what works for you. Enjoy the good times, and manage the flare ups,

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

Just understand that when the are in a flare up, it is very tiring and painful accept that they just can’t “keep going” sometimes.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

My Chronic Career – Warren’s Ulcerative Colitis

‘My Chronic Career’ is a (often) weekly feature here at WorkLifeSpirit, featuring interviews with people who have chronic health problems. The interviews focussing on not just their medical experience, but also the impact of their health on their life and career.

Warren Berman from Birmingham (UK) has very kindly agreed to be interviewed. Thanks Warren! Warren has Ulcerative Colitis and his medical journey is not typical – he’s had a lot to deal with in a short space of time.

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your medical history?

Prior to being becoming ill with Ulcerative colitis in March 2010 I hadn’t had any real medical problems since I used to suffer with as Asthma as a child and had only missed 1 day of work through sickness in the previous 5 years. Looking back prior to ever hearing a GP mention Ulcerative Colitis I had been suffering with symptoms for about 5 months. However I mostly ignored them and when I did visit the doctor I was advised it was probably just Gastroenteritis. As I always naturally seemed to get better I ignored when I had a series of a few days where I was ill. Eventually the series of a few days didn’t stop and my symptoms became worse. By the middle of March I went to my GP again and was advised it was probably Ulcerative Colitis or Crohns and was booked for a flexible sigmoidosopy in 10 weeks. My condition became worse over the next week and went to the doctors and but saw a different GP and was advised he couldn’t do anything and to wait for the flexible sigmoidosopy. My health deteriorated further over the next week, upon seeing my GP again was referred straight to hospital in Birmingham as an emergency admittance. This was my first also my
first sick day which ended up lasting 5 months. I was treated in hospital and after 8 days was told I was doing well and could home on medication and come back in 4 days to see how I was doing. I went back to stay with my family in Leicester, but on the hour drive to theirs my condition deteriorated again and had a large scale flare up and back in Hospital in Leicester the following
morning. I was put onto multiple different medications including immunosuppressants, but they were only ever effective for a few a days and I would flare up again. After a month of trying to treat me medically in hospital I was advised surgery would be the only option and had a total colectomy leading me to have an Ileostomy Bag with the aim to have a reversal over the next 6 months to a year. However from the outset after surgery I suffered from proctitus, ulcerative colitis flare up from the rectal stump that was left. These flare ups would occur like clockwork on a weekly basis.

However after 5 months The flare ups increased in frequency and painfulness until I was under a permanent flare up. My GP admitted me to hospital, I was there overnight and prescribed some prednisolone and discharged. This did not work and over the next 2 weeks my GP increased my medications until I was referred back to hospital again. After receiving stronger and different medication over the next 2 weeks I was advised the rectal stump left after the first operation was totally infected and would have to come out. After having so many problems in such a short period and with medication never working I had an operation to remove my rectum and lead me to now have a permanent Ileostomy without the possibility of a reversal. Knowing I would have to live with the bag for life became a real issue immediately after the operation as it I had only just gotten
around to the idea of having this ‘foreign’ bag attached to me but now I would have to have it for the rest of my life. I had several post operative complications after the second surgery but now am fully healed.

And how about your working life? What career path have you taken?

I have achieved a BSc in Psychology with Sociology and a Masters Degree in Occupational Psychology. This helped lead me to my current career in the NHS where I work in informatics. I had recently been promoted within Birmingham Children’s Hospital when I first became ill and was admitted to hospital 3 months into the new job. My employers were incredibly supportive and whilst
in hospital was in contact by the director from another department I had previously completed a project for. They advised a position would be opening up soon and they encouraged me to apply for it if I was fit. I ended up applying for the job and was successful in becoming the Clinical Information Manager for Theatres Anaesthetics and Acute Pain (long job title). I love my job and have been in the role since October 2010. Unfortunately again 3 months into my new job I became and lead to the second operation and another 5 months off. I have now been back at work for 6 weeks with my permanent Ileostomy but love being back. I have recently been made the Directorate Lead For IT, it is clear that the issues I have had in the past have not impacted on my development or the worth I have at work.

Did you know about your condition before you were diagnosed?

I didn’t know anything about Ulcerative Colitis, Crohns or any form of Inflamatory Bowel Disorders.

How did you find out further information about your condition when you were diagnosed?

Initially I didn’t look up anything as my GP didn’t explain anything about the condition and I (stupidly) assumed it would be something that would get better over time on its own or need a few pills. From the people and medical professionals I have spoken to about Ulcerative Colitis it is quite rare to have such a short period between initial diagnosis and needing an operation (just over 7 weeks in my case). But when I was in hospital I mostly used my phone to google info using Wikipedia to find info but also looked at forums. But being in hospital after being seemingly fine made it quite difficult for me to search for information as I didn’t want to know about the negative impact it would
have on my life.

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

After the first operation I mainly just used Google still to look for information. After the first operation I was misinformed that any flare ups were now just part of life and was never referred to a gastro consultant. Whenever I brought up the flare ups with my surgeon, stoma nurse or GP I was just told you could still have flare ups even after a colectomy. Because of this just thought it was something I would need to live with so didn’t really do much further research.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

Initially I had some very big problems finding an Ileostomy Bag that didn’t leak which made me incredibly paranoid about going back to work after the first op. I remember coming back from the job interview or my current position and by the time home my bag had leaked. I think part of resolving that was being proactive with the Stoma nurses and finding a bag that would work and could have confidence. All in all I went through 4 different bags and several extra products to help find a bag that would last over 24 hours. But losing and putting on weight changes the bodys shape and can again cause problems with bag leakage. So I keep a spare shirt and Ileostomy bag at work just in case.

One of the bigger issues I face at the moment is as a result of the operations a recent blood test had identified low iron levels and I’ve been diagnosed as anaemic. Because of this I can become very light headed and fatigued quite quickly. Missing meals makes the light headedness and tiredness worse. Although not the most lovely of subjects, it can be incredibly painful when the Ileostomy bag fills up whilst wearing a suit. As well, although when the bag is empty, it would be difficult to tell that anything is there, however when it fills it can make an obvious lump, that I do not want to have to explain or have other people be aware of. Because of this I am to be very proactive in managing my
diary to ensure that I am able to have lunch with sufficient time to go toilet and empty the bag or move about to reduce the pressure on the bag and make life more comfortable.

What is your top tip for employers – what could they do to support people with your condition?

I’ve been lucky in that my employers have been incredibly supportive with me and allowed me all the time and space needed to recover after having 2 operations in fairly quick succession. I think for me the most important thing is just being supportive. It can be an incredibly embarrassing condition to talk about with a lot of the symptoms of a flare up being not the nicest things to discuss.
Even after the operations it’s difficult discuss with someone who’s not gone through it. I think that whenever an presented with any type of chronic medical disorder or disability, employers should educate themselves on its impact and be supportive with any realistic changes.

What is your top tip for employees with your condition?

I think practical measures if you have a bag are avoiding meetings straight after lunch if you can help it, or at least giving yourself time for a to go to the toilet etc.

But I think on a more general level that because Inflammatory Bowel Disease’s in general is not an easy subject to broach, it’s quite easy to ignore telling employers what you’re actually going through. This type of disorder will be covered under the disability and discrimination act and should be taken into account if any sick days are caused by it. Not only that but reasonable adjustments can be made. I used to be a manager in a call centre where ‘personal’ times would be logged. The number of trips to the bathroom I would take when I had Ulcerative Colitis would have been seen as excessive and I would have been performance managed because of it. Unless employers know about
your condition they can’t help you.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

After the 2 operations to remover my colon and rectum I am now Ulcerative Colitis free, so flare ups is now no longer an issue. When I was having flare my coping mechanism was to sit on the toilet and wait for the pain to end, then lay down for a few hours. Others can probably give better coping mechanisms.

Do you think you have developed any personal skills or qualities as a result of having your condition? 

I now always know check there is toilet roll in the toilets before emptying the bag!!!

What advice would you give people who have just been diagnosed with your condition?

It’s not the end of the world. I only knowingly lived with Ulcerative Colitis for approx 7 weeks before needing an operation. Even though the thought of having an Ileostomy was scary there is so much support and information available it can be overwhelming. I would avoid reading clinical information straight away as it can be quite blunt and scary. Try and speak to real people who have gone through it as they can give a more realistic view how things actually are..

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

Just because you can’t see the pain or discomfort doesn’t mean it isn’t there. It’s not something that you can just grin and bear and carry on with life. And just because you’ve had food poisoning doesn’t mean you can identify with a flare up or comprehend what life’s like living with a bag attached to for the rest of your life. Constantly saying ‘chin up’ is not always the most helpful advise, acknowledge that yes the situation is crap, but you’re not going anywhere. People always need a hug.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

My chronic career – Crohn’s and the professional hospital patient

‘My Chronic Career’ is a (often) weekly feature here at WorkLifeSpirit, featuring interviews with people who have chronic health problems. The interviews focussing on not just their medical experience, but also the impact of their health on their life and career.

Michael A. Weiss from the Northern New Jersey/New York City Area (USA) has very kindly agreed to be interviewed. Thanks Michael!

Michael’s website is www.hospitalpatient.com  and he has written a book on his experiences called Confessions of a Professional Hospital Patient which you can buy through Amazon in the US and the UK.

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your medical history?

After athletic teenage years filled with a few bizarre Medical ‘Incidents’, I played and partied my way through college until shortly after graduation when the auto-immune aspects of what I was to learn was Crohn’s Disease started to become more pronounced.

More specifically, I had Four (4) Wisdom Teeth extracted at the same time, a common practice back then (i.e., in 1984), but after initially recovering each side of my face swelled up for MONTHS afterwards.  I looked like a confused Chipmunk and my Dentist and Doctors were absolutely perplexed. I tried every antibiotic imaginable and they even considered placing me in a hyperbaric chamber to help me heal.

Then I started complaining of frequent onsets debilitating joint pain and overpowering feelings of lethargy.  I also would suffer extreme allergies to the point where I couldn’t get out of bed while others simply struggled with the typical hay fever symptoms.  My Doctors started to question my veracity and as a tough, confident and passionate young man, that seriously bothered me because the last thing I wanted to do was lie in bed or not ‘compete’.

It all came to a head, however, a few weeks later when I was at the 3rd day of some ‘just killing time’ job in New York City and the staff decided to celebrate a co-worker’s birthday with flavoured popcorn which was quite popular back then.  Little did I know that Popcorn is to Crohn’s Disease as Jennifer Lopez is to Marriage and approximately an hour later the crampy pain was so intense that I locked myself in the bathroom of this corporate office whose workers I barely knew.  I was hoping it would pass but instead I soon passed out!!!!

Somehow these very nice people called an ambulance and I wound up in a Hospital for 2 weeks where I was diagnosed with a classic case of Crohn’s Disease.

While this ordeal sounds tough, the one GREAT thing about it was when the Doctor handed me some pamphlets from the Crohn’s & Colitis Foundation (the CCFA) which described the symptoms of Crohn’s Disease and it was like reading a diary of the past 18 months of my life.  It was incredibly validating and I think I was on the verge of even losing the support of friends and family at that point in time. When they read the pamphlet their skepticism turned into tremendous respect for me and how I had dealt with this very difficult disease over the past 18 months.

Unfortunately, my case of Crohn’s Disease, which is a broad spectrum chronic illness, was very aggressive and required many hospitalisations (200+ and counting) and surgeries (approximately 20) over the next 20 years or so.   After that it has been the auto-immune aspects which have affected other parts of my body and most recently I had to pay the piper for some very effective Anti-TNF Agent Drugs which had kept my Crohn’s Disease in remission but came with the risk of upper respiratory problems.  Well, those problems turned into recurrent pneumonia and  only a few months ago they necessitated lung surgery as I have some inflammatory lung disorder known by the acronym B.O.O.P. and it is quite serious.  In fact, the only successful cure is ONE (1) YEAR of a high daily dose of steroids (i.e. prednisone) so the potential cure is proving to be as problematic as the underlying illness.

And how about your working life? What career path have you taken?

After being diagnosed with Crohn’s Disease, I was hell-bent proving to everyone, including myself,  that you can still have balance in your life despite having to live with a chronic illness.  As a result, I obtained my MBA degree and then my Law Degree and practiced Entertainment Law for several years.  I also maintained an active social life as no matter how sick I got, I never looked the part.  Having said that, however, I don’t think I respected the illness as much as I should have because I probably went too far in proving to myself that I was not as chronically ill as I really was.

This became more evident to me in my late 30s (I’m 48 presently) as my mind kept making promises that my body couldn’t keep.  But I’m one of those people who never regrets what he didn’t do, i.e. I will only regret the things I did do.

I picked very social industries to work in (i.e., the Film and Entertainment Industries) and had a blast transforming from attorney to business affairs to film producer.  The film producer part ultimately made me face having to relocate from the New York/New Jersey area all the way out to Los Angeles, California.  During that contemplative process, I realised that my illness was either going to be an albatross that would keep me on the East Coast or it would be the ‘Fear I Faced’ in order to move forward with my life’s dreams and aspirations.  I didn’t realize how attached to my doctors I had become and that was the big obstacle.  However, the very fact that it was an obstacle proved to me that I had to do it otherwise I could never look myself in the mirror.

So, I ‘interviewed’ several doctors each time I was out in LA on business and eventually I connected with a few and it was only after I had fully committed like that when a job offer appeared seemingly out of nowhere and shortly thereafter I was a bona fide resident of Santa Monica, CA.  Life works in strange ways but I learned that someone is listening!

I must also say that in the middle of my career as an entertainment industry executive, I started to write about my interactions with the Healthcare System as my friends found my Hospital and Doctor stories to be strangely hysterical.  The result was my first book entitled, “Confessions of a Professional Hospital Patient.”

I have been told that the book Is not only the most accurate account of what it is like to be a patient both in and out of the Hospital but its candor and laugh-out-loud humor makes it an uplifting reading experience – and who would have thought that about a book which  attempts to teach people how to live, love and laugh with Chronic Illness!

While I wrote the book in 2001 when there was a national debate about a possible “Patient’s Rights Bill” and that landed me on many mainstream media TV/Radio Shows including NBC’s coveted “Today Show,” the tragic events of September 11, 2001, understandably changed the focus of the global dialogue.  I was literally poised to be on all of those TV Shows where people shared their bizarre experiences for the benefit of others and I’m sure that would have sold a great deal of books.  However, I learned a great deal during the exciting experience of being on different TV shows and radio stations and I thought the future was going to be all about the Web so I purchased every “hospitalpatient” domain name possible and planned to eventually start writing about Healthcare on the Web.  In fact, the URL, www.HospitalPatient.com, is printed on the Book’s Spine.

There was something about new media which I found fascinating and my career in Film and TV was also gravitating in that direction so things seemed to be moving forward despite Healthcare not being the Number 1 priority for the USA.

Thanks to the resurgence of interest in Health-Care Reform and the advent of new and social media, my first book has become an “Evergreen” seller and that has provided me with the privilege of being able to reach and influence the growing niche of people living with some form of chronic illness. To that end, I have been focused on helping with the global development of “Health Care Social Media” (“HCSM”) utilizing a variety of Social Media Platforms such as posts on Twitter, Podcasting on YouTube, and Articles on my Blog as I believe HCSM is the patient-driven medium that will be the “Game-changer” we need to offset the Cartel-like business practices of most health insurance companies.  But I always try to make my approach to Healthcare FUN and I never lose my sense of humor about my plight.

Did you know about your condition before you were diagnosed?

No.

How did you find out further information about your condition when you were diagnosed?

I detailed this a bit above but I’d like to add that beyond being validated by the initial symptom information I learned about Crohn’s Disease from those CCFA pamphlets, I took a Groucho Marx approach in that: “I don’t care to belong to a club that accepts people like me as members.”  By this, I mean that I did not want to belong to the different Support Groups for Patients with Crohn’s Disease because I saw those people as being SICKLY and I’m was an athletic “party person.”  Therefore, what could possibly learn from them?   Well, as Life has turned out, I probably have one the most unique cases of Crohn’s Disease in the world and/or my record of being hospitalized over 200 times with almost 20 surgeries would certainly qualify me to be a member of such Support Groups.  Moreover, a day doesn’t go by when I am not helping another Crohn’s Disease Patient on Twitter or addressing their complimentary emails about my Book, etc.  So, for someone who shied away from other folks with Crohn’s Disease, they now seek me out for my information and I am honoured to share it with them.  I guess that means I have finally grown up after all.

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

Any site that shows an awareness of “Health Care Social Media” (“HCSM”) is usually credible for me.  This ranges from Healthcare Portal sites like WEGO Health to the Yahoo Group about Crohn’s Disease to certain Podcasts and some Facebook pages.  Some ‘Patient Community’ sites are also becoming reliable sources of information.   I think it is important to understand that you are going to meet people on the Web who have an agenda which skews their ‘data’ and until you figure out how to screen those people the benefits you will get from the Web will be limited.  Therefore, I suggest that people use HCSM tools but in a ‘diversified’ manner so that they stand a better chance of getting credible information.  Lastly, when a content provider or patient only writes about extremes – good or bad – I usually find that NOT to be very credible as I would prefer a more consistent Blogger or Podcaster because the reality is that most interactions with the Healthcare System are routine.  The extremes should stand out as just that and not be the norm.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

Crohn’s Disease and working in a very structured high pressure environment is not a good combination.  With that as a Foundation, I think it is important that you understand your illness and then find employment that is reasonably best suited towards its ‘disposition’.  For me, that meant I had to work at small companies and then ultimately on my own.

I have worked for law firms and larger companies and they have all been very respectful toward my illness but I always sensed resentment (on their part) or guilt (on my part) and I didn’t like that.  I preferred to work in an environment where my contributions were gauged on their quality and not on ‘Face Time’ (i.e., number of hours worked on a weekend or just being seen in the office on a weekend).

There were many embarrassing situations at work due to the ‘bathroom-nature’ of Crohn’s Disease and that just taught me a great deal about my own resolve because people think it’s because you can’t handle pressure when you know you can and that it is just your illness acting up at an inopportune time.  Lastly, I learned that when you have a Chronic Illness and you have issues in the workplace, it is best to use your illness as a shield and not a sword.  I mention this because of the various Disability and Discrimination Laws as patients shouldn’t be taking advantage of these laws that are meant to protect them.  So long as you follow that edict, people will respect your plight and they will do everything they can to help you.

What is your top tip for employers – what could they do to support people with your condition?

Flex-time and/or Working from home (with the proper technology) so that people in general, and specifically those with Chronic Illnesses and Disabilities, can work smart and efficiently.  There is too much emphasis placed on ‘working hard’ or working long hours, when the focus should simply be on getting the job done.  If employers make it clear from the get-go that all employees will be judged based on  their performance, I think it will ease up the stress and then tools such as Flex-Time and Working From Home (when necessary) can be vital to smart working (This approach became crystal clear to me after reading the tremendously insightful Book, Four hour work week by Timothy Ferriss.  As an attorney who billed by the hour, I never understood why clients let law firms get away with that type of billing arrangement.  It’s as if clients will accept the inefficiencies of some attorneys who may not be as talented as the ones they think they are hiring.  To that end, if you are so talented then any chronic illness or disability should not matter because ultimately it is all about working smart and getting the job done.)

What is your top tip for employers with your condition?

Get educated about the broad spectrum of Crohn’s Disease and also about how serious it can be. Learn about the needs of a Crohn’s Disease Patient so that when your employee rudely darts out of a meeting to use the bathroom, don’t be so quick to judge.  Conversely, I think the Crohn’s Disease Patent must educate his or her employer if such instances are going to occur.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

I think about the incredible support system I have and that so many people respect how I manage my illness.  I never feel sorry for myself or wonder ‘Why Me?’ as I think those are wasted emotions.  I am always focused on doing whatever I can to move forward.   If I have a flare-up and my body obviously is not cooperating with my plans for that day, I try to nevertheless somehow be productive by listening to an audiobook or reading a magazine I never would normally have the time to do.  When I must completely shut down and sleep, I try to embrace that scenario and realize that I will get to fight another day.

Do you think you have developed any personal skills or qualities as a result of having your condition? 

LOL. Yes.  I’ve become a realist who is accustomed to battling all types of adversity.  It is often frustrating that my Life seems to be largely about staving off devastation of one form or another but the fact that I can write about it and share how I did it with similarly afflicted people makes me feel as if it is a good thing that I got Crohn’s Disease as opposed to someone else who may not have coped with it as well as I have.  But please let me say that I only cope with it this well because of the lessons I’ve learned over the years through the relentless support of Friends and Family.

What advice would you give people who have just been diagnosed with your condition?

Don’t listen to everything you hear or believe everything you read.  They are making great strides in treating Crohn’s Disease and the longer you live – the longer you live.  Meaning that if you are able to keep going, they may find a Cure in your lifetime.  Also, having Crohn’s Disease won’t be a Deal-Breaker in terms of human relationships (i.e., Friend, Lover, Employer, etc.)  but how you handle having Crohn’s Disease will be.

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

If you really care about the person, please buy my Book, Confessions of a Professional Hospital Patient and get educated about what Crohn’s Disease is and what it is like to live and cope with it.  The book is available at Amazon.com, Barnes and Noble and easiest to purchase at www.HospitalPatient.com as there is a picture of the Book with a Click-Through to the Amazon.com Page on which it is sold.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

My Chronic Career: Ray’s Crohn’s Journey

‘My Chronic Career’ is a series of interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.

Ray Rothfeldt from NYC Area has kindly agreed to be interviewed. Thanks Ray!

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your medical history?

Originally diagnosed in 1992. Have never achieved full remission, but developed coping mechanisms that allow me to function somewhat like a “normal” person. Was a part of the clinical trials for Remicade in the mid-1990’s. My medications have been greatly adjusted over time. I’m also a classic example of too much prednisone exposure over time, as I cycled on & off for close to 12 years; now
suffer from cataracts and osteopenosis as a result. Currently taking Cimzia, in addition to Apriso, 6-MP and vitamin supplements.

And how about your working life? What career path have you taken?

When originally diagnosed, I was a technical project manager for a company that serviced most of the major passenger lines – P&O, Royal Caribbean, Norwegian Cruises, Cunard, Viking, etc. It soon became obvious that Crohn’s was not compatible with a schedule heavy on international travel, so I moved into retail management. Over the next 15 years, I worked for large companies (Radio Shack) as well as operated my own store, turning my love of biking into a successful bicycle shop on the New Jersey shore. I sold that business and am now a serial entrepreneur. My last company is now the primary provider of technological campus safety products in the US. My current company,
started in 2010, is focused on providing advanced technology solutions to the small and medium sized business market, utilizing cloud technologies. No reason the small guy can’t have the same technology as the IBM’s and GM’s of the world.

Did you know about your condition before you were diagnosed?

I had never heard of Crohn’s Disease.

How did you find out further information about your condition when you were diagnosed?

Since the internet was just beginning, the only way to research was to ask my doctor (who never had the time to answer, and I didn’t know the right questions, anyway) and whatever I could find at the local library (which wasn’t much).

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

Crohn’s and Colitis Foundation – http://www.ccfa.com
Crohn’s Disease Support Network – http://www.crohnsdiseasesn.com/
Cleveland Clinic (this hospital has been on the forefront of research for decades) – http://my.clevelandclinic.org/disorders/Crohns_Disease/hic_Crohns_Disease.aspx

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

Finding employment is easily the most difficult issue. Despite laws supposedly preventing discrimination based on disabilities or medical conditions, most employers are no longer interested once you tell them you have Crohn’s. This places most patients in a corner: if they tell the employer, they’re chances of being hired go down (deadly in this economy). If they do not disclose this
information during the interview process, they can be terminated for failing to do so. And we all know that, all CD patients will experience a flare that is likely to require hospitalization.

What is your top tip for employers – what could they do to support people with your condition?

The people I’ve worked for, since I disclosed my condition during the interview process, understood that I was going to have good days and not-so-good days, as well as occasional hospitalizations. They were supportive in that they allowed me to take time when needed. But my career was held back their reluctance to assign me the projects and duties that would have led to faster promotion,
despite my ability. So, two things: First; do not discriminate during the hiring process, second, do not fear handing out tough assignments based solely on the assumption that the employee is less capable than their associate.

What is your top tip for employees with your condition?

First, be honest about your condition with your employer. Educate them – which means educating yourself. Most employers aren’t ogres – they’re real people, just like you. If they realize that you’re taking more toilet breaks than your co-workers not to go grab a cigarette, but for a real medical reason, their outlook will change.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

For me, it’s slowing down a bit and de-stressing. If the flare is mild, I’ll exercise a bit more (great stress reliever!). If it’s a major one, well –then it’s time to get an appointment with a doctor.

Do you think you have developed any personal skills or qualities as a result of having your condition? 

I’ve definitely developed more patience over the past 20 years and a greater appreciation for the little pleasures in life. Having Crohn’s can be hell unless you learn to accept that you aren’t going to be cured tomorrow, next week or likely even next year. Not unlike you, I think I also know the location of every public toilet and hours of operation in the greater NY metro area. I’ve also developed a catalogue of toilet jokes (have you heard the one about why Crohn’s patients are like Texaco? Both have a ton of gas!).

What advice would you give people who have just been diagnosed with your condition?

1. Research. Learn. Discuss. You have a great advantage in that unlike 20 years ago, the number of people with Crohn’s today has ballooned. With that, the information available has exploded. Avail yourself of it.
2. Find a good gastroenterologist and develop a good relationship with them. If you can, find one who not only practices, but also researches and teaches (my current GI doctor is a staff professor at UMDNJ, my one prior to that was on staff at the University of Pennsylvania).
3. Don’t give up hope and maintain a positive outlook. Too many patients develop a woe is me attitude, and those are the ones who you see always complaining about some problem. And remember, nobody wants to hang with “sad sack!”
4. Humour is a terrific weapon against Crohn’s. Learn to find the humour in things. Even Crohn’s has a funny side. Give it a shot.
5. Develop a close support network of friends and family.
6. Learn the locations of public toilets, but keep a spare pair of underwear handy. Since I use mass transit quite a bit (in this area, it’s often faster), I keep a set in my briefcase or backpack.

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

See #1 above. It applies here, too.
2. Accept that your loved one, whilst still the same person, is going to have some rough patches and may be reliant on you for both emotional and physical support occasionally. If you get a call asking to walk the dog, be a pal and take Fido for a stroll.
3. Get to know your loved one’s treatment regimen. If they are anything like me, all of the medication and appointment reminders in the world still won’t be  enough. Half the time, if a co-worker or family member doesn’t nudge me, I’ll still be late with my pills.
4. Develop understanding. Don’t admonish them if they suddenly get up from the dinner table to race for the toilet.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

My chronic career – Sarcoidosis and fibromyalgia

I’m delighted to announce a new feature here on worklifespirit. ‘My Chronic Career’ will present interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.

Morgan Bowers from Wolverhampton, West Midlands has kindly agreed to be interviewed. Thanks Morgan!

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your Medical history?

I have sarcoidosis of the eye & possibly nervous system, benign joint hypermobility syndrome and fibromyalgia.  Generally they are related conditions give me debilitating fatigue, aches and pains, as well as inflammation of joints (ligaments), shortness of breath and pain/inflammation of both eyes (iritis).  I have been ill for some years but only recently was diagnosed with sarcoid after yet ANOTHER trip to the eye infirmary.  Sarcoid is an auto immune disease which can affect any organ.  There is no cure, although steroids are often given as treatment for inflammation.

And how about your working life? What career path have you taken?

I’m trained as an ecologist, currently working as a Senior Countryside Ranger.  I have worked for the RSPB and Wildlife Trust, generally in conservation and ecology, and have also worked as a freelance bat ecologist, doing surveys.

Did you know about your condition before you were diagnosed?

I had never heard of sarcoid, but I knew about fibromyalgia and had suspected it due to its connection with Benign Joint Hypermobility Syndrome, which I was diagnosed with some years before during physiotherapy.

How did you find out further information about your condition when you were diagnosed?

The internet – the first I learned about it was being told that I had elevated levels of something called ACE, which I had to look up.  The truth is that GPs don’t actually know a lot about sarcoid or fibro, and many people are in the dark until they are diagnosed and sent to at least a rheumatologist.

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

http://sarcoidosissupport.ning.com UK Sarcoidosis Information and Support Group

http://sarcoidosis.ning.com/ SILA – Sarcoidosis Support Charity

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

My job requires some unusual hours, lots of driving and often dealing with the public. The first two can exacerbate my condition, and dealing with the public means that you can’t show that you’re in pain, which you do get used to eventually.   I have to just take things one day (or even an hour) at a time and pace myself.

What is your top tip for employers – what could they do to support people with your condition?

Well I think understanding it is one of the best things they can do – and for example in my position (on a temporary contract which may lead to a permanent one) I worry that my condition may be a factor in the decision my employers make regarding extensions to my contract. I am worried that they will think that I can’t do my job, or I’m too much of a risk / unreliable attendance really. So I only take sick days if I’m literally unable to get up and go out of the house.

What is your top tip for employees with your condition?

I’ll let you know when I figure that out! I don’t want my colleagues to think I’m whingeing about my health all the time, but I also need to let them know if I’m not capable of something, or need help. They are pretty wonderful actually, but I struggle finding a balance in how much and how often to communicate about what I’m going through. It can be pretty isolating, so its important to have a good support network OUTSIDE of work. My friends and my husband and brothers are, well, there aren’t words. I am very blessed.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

I immediately cancel all activities outside of my minimum work hours, as I know that I will be wracked with fatigue and pain.  I deliberately expose myself to positive influences (funny movies & books that make me laugh) as it can be a battle to keep your spirits up.  I think my biggest coping mechanism is to modify my expectations of myself and what I can physically accomplish.  Its very easy to fall into feeling guilty, which exacerbates feelings of laziness and worthlessness and frustration.  Flare-ups can spontaneously go into remission, so I always have that carrot dangling.  It could be tomorrow and I’ll be myself again.

Do you think you have developed any personal skills or qualities as a result of having your condition? 

My god I have learned to be patient!  And also to treasure my good days, which is something people take so for granted.  Actually feeling healthy and energised is a precious thing – I never take days like that for granted anymore.

What advice would you give people who have just been diagnosed with your condition?

Wow, well I think don’t panic.  But if they’re anything like me they will just be glad to finally have a diagnosis.  I have never been so happy to hear bad news!  My main advice is to SLOW DOWN, don’t expect too much of yourself, don’t expect miracles, and pace yourself – don’t go crazy if you have a good day, it will knock you back.  Get a good GP who is willing to discuss your condition – as many won’t/don’t , and rheumatologist appointments are a long wait.

So do less.  Expect less.  Give yourself time.  Improve the quality of your sleep.  Reduce your stress levels.  Eat right.  Exercise if you can (its so hard!).  Communicate.  Rely on your friends for support.

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

They are going to feel a number of things, often in quick succession:  weak, angry, lazy, frustrated, alone, unsupported, misunderstood, tired, aching, exhausted, tearful, breathless, dizzy and even depressed.

My husband has been fantastic, calling my Sarcoidosis “the surfin’ sarcoids” – because they surf around my body.  If he sees I’m having a bad day, he asks if they’re surfing a lot today, and that’s a nice way for me to talk about feeling awful, but in a way that’s funny and I don’t feel guilty for talking about it that way.  Its easier to talk about the surfin’ sarcoids than to whinge about Sarcoidosis.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

My chronic career interview questions

‘My Chronic Career’ is a series of interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.

If you work and have a chronic health problem you can contribute to this series by completing the questionnaire below and sending it to me.

1. Can you tell me a bit about your medical history?

2. And how about your working life? What career path have you taken?

3. Did you know about your condition before you were diagnosed?

4. How did you find out further information about your condition when you were diagnosed?

5. Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

6. Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

7. What is your top tip for employers – what could they do to support people with your condition?

8. What is your top tip for employees with your condition?

9. When you have a flare up of symptoms – what is your ‘coping mechanism’?

10. Do you think you have developed any personal skills or qualities as a result of having your condition?

11. What advice would you give people who have just been diagnosed with your condition?

12. What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

My Chronic Career – Gary with Crohn’s Disease

My Chronic Career’ presents interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.

Gary with Crohn’s Disease has kindly agreed to be interviewed and his story is below. Thanks Gary! 

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about yourself and your medical history?

My name is Gary and I am originally from Northern Ireland. I am currently at Bournemouth University studying Forensic Science. I have the world’s greatest Girlfriend. Not only is she the love of my life but she is the probable reason I am still walking the earth! Although university is meant to be the best experiences of your life, for a Crohn’s suffer it can be the  most horrifying thing since they were diagnosed.

I was diagnosed with Crohn’s disease in November 2008 and have had to have 1 major op in march 2009 that probably saved my life. I also met the love of my life in January 2009 so she probably saved my life too.

I took ill first when I was in Belgium on holiday and originally thought I had contracted food poisoning from rabbit stew. After nearly 6 months the doctors decided that given the length of time I had been ill to get me properly checked over. I was sent for a number of different tests and I went to pick up my results fearing the worst!

When I first started high school aged 14 I was ill a lot and it was put down to bullying and no matter how much I said I wasn’t the more I got sick and I had to be protecting someone. So I believe that I had Crohn’s for at least 4 years before diagnoses. After I was diagnosed I was given tablets and that helped me stabilise but that was short-lived as within 3 months I was very ill. This led to 3 weeks in bed and 11 days with no food staying in my body. This led to scenes similar to those of “The Exorcist” only from both ends at the same time.

The knife was the only option by the time I got to the hospital! I had 6 inches of my small bowel removed and the ileocecal valve restructured and connected up again. Then 5 days of severe fighting lead to me coming out of hospital in record time, just in time to watch my beloved Man Utd win the Carling cup. But this again was short-lived as by the Tuesday, 3 days after being released ,my stitches burst and evil-smelling pus came flowing out the 12 inch lateral wound on my abdomen. Cue, another 2 days in hospital getting that drained and re stitched!

After that it was home time and a host of appointments and checkups. Though I managed to squeeze an Easter break over to Bournemouth to see my Uni and  meet up with the 2nd love of my life. My long-term girlfriend of 4 months at the time. For this break I got a severe telling off as I wasn’t meant to be doing very much during my rebuilding never mind flying to England! Lucky until September 2010, I haven’t looked back.

And how about your working life? What career path have you taken?

My Crohn’s has never really got in the way of my work or play to be honest. I have worked in 4 different bars and restaurants since being diagnosed. I also worked in a food processing plant distributing meat products all over the UK. Add to that I worked last summer in an amenity site to gain money for uni. I also play amateur league football. So this meant that I was in college during the day, 3 nights football training and sometimes 2 matches a week. So I can honestly say that my Crohn’s has never got in the way but at the same time I haven’t let it beat me!

Did you know about your condition before you were diagnosed?

To be honest I had never heard of it. When I went for my results and the doctor said they had found “abmormal” cells in my intestines he sent me up stairs to see a specialist. I played the scenario over in my head of how I going to tell my family & my new Girlfriend I had cancer! This is the only conclusion that I had considered.

How did you find out further information about your condition when you were diagnosed?

The doctors and specialist gave me tonnes of leaflets and information from NACC and I spent the rest of the week reading everything I could get my hands on. I then started the process of telling everyone and explaining what I had and how I was going to “fix” it.

Also with the course I was studying (forensic science) they allowed me to do my medical research project on Crohn’s disease and this allowed me to talk to people all over the world that had various stages of the condition. All this was very informative and I believe that there is never any bad news, just news that you have to interpret! Never the less I got the highest grade available for my project and it was displayed for the world to see (well anyone that wanted to read it)

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

I have a lot of friends online through various Crohn’s forums and through Facebook. Through my project I trailed through hundreds of websites but I do like to read the latest info coming out through a university group from America on Facebook. They are very quick to get the latest techniques and research online. They are truly amazing!

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

I never had that many problems with my work as I had the freedom and understanding from my bosses that I needed the toilet when I needed it and that if I missed work I would work up the time or get cover a.s.a.p. This worked well as I worked with a group of girls that often wanted to swap shifts after heavy nights so I worked when I could and called in favours when I couldn’t. Though during the time I was ill and having to have the op, I was laid off as I had bad time keeping and unable to work for weeks because of the recovery from the op. The company did offer me a new job when I was fit to work again, though I didn’t take this and instead got a cash settlement in way of the holidays I would have been owed if they hadn’t laid me off.

What is your top tip for employers – what could they do to support people with your condition?

My top tip would be work with the employee, let them have the freedom to negotiate their work at short notice. This is how my bosses worked with me and It worked well. We always had someone nominated to fill in just in case there were people ill or unforeseen circumstances. This worked well and although it may not be ideal but it works well in the long run because having that person on standby not only covers the Crohn’s patient but covers the hangover victim or the mother whose kids have been ill all night.

What is your top tip for employees with your condition?

My top tip for the employee is to open with the boss and the other employees. If people know what is going on they may be less likely to see your treatment as favouritism or talk behind your back. You will feel better about having to call on them if needed or having to phone in sick at the last moment.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

When I take ill I tend to lie down and die for the duration of the flare up. Everyone knows I’m ill when I “stop”. Being quite active is an advantage because I can deal and cope with a lot and its only when it becomes unbearable that I have to admit defeat (if only briefly). I also tend to recover quicker if I starve myself and only take on fluids. I find this gives my body a break and allows for quicker recovery and I also find kicking a football about is a good release as well. Not exactly a Crohn’s coping mechanism but it is a stress relief and stress is a major contributor to the flare ups, so maybe it actually is.

Do you think you have developed any personal skills or qualities as a result of having an your condition? (I for example have encyclopaedic knowledge of public toilet locations!)

Other than outstanding knowledge of every toilet in my university, town and neighbouring towns I think I have developed the quality of being able to work my socks off in a small time scale as I am either working to catch up or working to get a little bit ahead so I have a built-in mechanism allowing for illness. This stood by me at college as I was streaks ahead in all areas and allowed me the time off without having to worry about being behind. Therefore a lot of the pressure is taken off and stress dramatically.

What advice would you give people who have just been diagnosed with your condition?

Research and read everything you can get your hands on. It allows you to know what is going on inside and prepares you for what might be coming in years to come (hopefully not though) if you understand what is happening then you can tell others and the taboo that goes with the whole condition becomes non-existent and you and those close to you can deal with it and help to keep you on the straight and narrow

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

Read about Crohn’s and support the person that has been diagnosed. They will feel a lot better if they haven’t the need to explain everything every time something occurs! They will also feel better about approaching you as they know you understand and will help them get through the rough as well as the smooth!

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

My chronic career – Crohn’s Disease

I’m delighted to announce a new feature here on worklifespirit. ‘My Chronic Career’ will present interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.

Tim Albert from Milwaukee, WI has kindly agreed to be interviewed. Thanks Tim!

Tim is 23 years old from Wauwatosa, Wisconsin. He was diagnosed with crohn’s at the age of 14, but has been leading a relatively normal life. He is a recent college graduate and young professional working in the IT field. He is also an aspiring entrepreneur, and has recently created a blog (www.crohnsoncampus.com) to help empower college students suffering from crohn’s disease.

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your Crohn’s history?

I have a moderate case of Crohn’s. I was diagnosed when I was 14 years old while I was in the middle of my freshman year of high school. It started with diarrhoea and stomach pain, and after a series of horrendous tests and procedures I was diagnosed with Crohn’s.

I have had way too many hospitalizations and have been in and out of remission. However, today I am on a strict pill regiment and I receive Remicaide once a month. Most importantly I am living a relatively happy life.

And how about your working life? What career path have you taken?

In high school, I attended most of my classes (senior year I may have used the Crohn’s to get out of a few days of school, sorry mom). I attended all of my school dances and was on the track and swim teams.

I was accepted into Saint Louis University where I majored in business administration and was amazingly able to graduate in 4 years. While in college, I was elected the president of the national honor society. I rushed, pledged and was initiated into a social fraternity. In the frat I held leadership positions and did my fair share of partying. I also held down numerous campus jobs including help desk security worker, and IT help desk worker.

After school I moved to Wisconsin where I am currently employed as a Quality Assurance Engineer at a small software development firm.

Did you know about your condition before you were diagnosed?

No. I had no clue the Crohn’s Disease existed.

How did you find out further information about your condition when you were diagnosed?

I really just started searching on Google. However, when I was first diagnosed I was almost in denial that I had the disease, and most of the information I found scared me shitless, (sorry for the inappropriate pun) so I pretty much just avoided learning anything about the disease.

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

I would say CCFA.org is your best bet if you need some information about Crohn’s today. You can really get lost on that site; there are just so many links.

One site I would stay away from however is WebMD. No matter what, I always find myself freaked out that I have cancer after visiting that site.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

The thing that I have found to be the most difficult is dealing with missing work. Even though I have paid time off, I feel like I need to take off like once a week, which doesn’t allow for much PTO to use for pleasure. Your employer doesn’t want you to miss work and I am always worried that I am going to get fired for missing so much.

If you don’t have PTO this would be even worse because you will be losing money to deal with the Crohn’s.

What is your top tip for employers – what could they do to support people with your condition?

Allow for flexible scheduling. My employer allows me to work at home when I’m not feeling well. This is especially useful for people with Crohn’s because a lot of times you don’t need to be laying in bed sleeping, you just need to be close to a bathroom. As long as you are getting your job done, I see no reason an employer should say no to working at home.

What is your top tip for employees with your condition?

Be prepared. Pack all the things you think you might need on your worst day and leave that emergency kit at work or in your car. Scope out the bathroom situation ahead of time. It’s not worth being uncomfortable at work. If you have to go, go. Even if is going to be the loudest smelliest one you have ever let go. (Sorry that was 3)

When you have a flare up of symptoms – what is your ‘coping mechanism’?

Humour. The disease is like a prank from god, if you don’t laugh at it, it will get the best of you.

Do you think you have developed any personal skills or qualities as a result of having your condition? 

Absolutely, I am always conscious of where bathrooms are. I have also developed a mentality that allows me to just not get embarrassed anymore when things happen that may traumatize the average person. A lot of times there isn’t anything you can do about it so there is no reason to sweat it.

What advice would you give people who have just been diagnosed with your condition?

It’s not the end of your life. Yes, things are going to change but you can change as well. The human body is truly amazing, and you can do anything, I repeat ANYTHING you want with Crohn’s. Do NOT let the Crohn’s imprison you.

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

Be supportive, but at the same time don’t treat them like they’re handicapped. The best friend of someone with Crohn’s is a friend that listens.

And if there is a question that I have not asked which you would like to answer please add the question and the answer below!

I have found that a lot of young professionals with and without Crohn’s have one burring question after they have been working in an office for a while. That question is: Is it all right to fart in your cubicle? I want to let everyone know that the answer is YES! That is your space, and everyone would rather you do a good job at work than sit there all backed up and uncomfortable.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

My chronic career – Rachel’s story (ME)

‘My Chronic Career’ presents interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.

Rachel Hawes from Cambridge UK and author of the Surburban Yogini blog has kindly agreed to be interviewed. Thanks Rachel! Rachel is a punk rock yogini, teacher, writer, massage therapist, sprinkler of fairy dust and lover of all things glitter, cake, kittehs, pugs and Dave Grohl and her story is below.

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your ME history?

I was first diagnosed with ME when I was in sixth form college (17-18 yrs old).  I was studying for three A Levels as well as Dance Foundation and suddenly I just couldn’t do anything anymore.  I was exhausted all the time, my whole body ached and I just seemed to get infection after infection.  I was skinny anyway but couldn’t put on any weight, could hardly eat and on prescription painkillers to see me through.

I got through my A Levels but instead of going off to university I went to stay on my Aunt’s farm in Tasmania to recover.  A year later, I’d beaten it.  Or so I thought.

Throughout university my health went up and down in peaks and troughs with frequent bouts of tonsillitis, throat and chest infections.  Nobody really knew what was wrong with me and I never really pursued it, happy at the time to deal with the symptoms rather than the cause.

It wasn’t really until I was living and working in London after university that I started to look into this all more deeply.  I completely crashed and burned in about 1999/2000 – I had constant headaches, ached all over and could not get to work on time for the life of me.  When I passed out on the tube I realised that I had been living in denial and the ME hadn’t actually gone anywhere.

I had a really sympathetic dr (in fact I have to be honest that is the only sympathetic doctor I have ever had when it comes to ME) who did the whole myriad of tests I’d had back in 1991 and then some.  Everything came back negative.  Instead of just dismissing me as some doctors had before, she advised me to rethink my work, to consider the lifestyle changes that had made me feel better last time and she put me in touch with an acupuncturist.

And how about your working life? What career path have you taken?

My main ambitions when I was at school were either to keep dancing or to study archaeology, but sadly my health problems put a stop to both of those.  After I came back from Australia I went to university and studied Ancient History – a nice desk based subject!

I waited tables for a couple of years after graduation which really didn’t do my health any good, before taking a secretarial course and starting a career as a legal PA.  I worked in various firms between 1998 and 2008 taking a career break in 2001 mainly due to health problems.  However I am a firm believer in never giving in to this illness and 2001 didn’t see me  feeling sorry for myself at home – I enrolled on a part time MA course.  By the time the course was over and I’d got my second degree my health had improved tenfold.

Sadly I still didn’t quite understand that what had made me better for the second time was changing my lifestyle.  In 2003 I went back to work for a big City Law firm in London.  It really shouldn’t have come as a surprise when my health suffered again!

Luckily this time I was in a really understanding firm.  I found myself being honest with them about my condition for the first time and they let me work shortened hours and occasionally from home.  Because of this I learned not only how lifestyle choices affect this condition of mine but also exactly the lifestyle I wanted to help me get out of working in offices altogether.

In 2005 I began my yoga teacher training part time whilst working.  In 2008 I rather tearfully left that great law firm who had been so supportive to go my own way.

These days I run my own business – I am a yoga teacher and massage therapist.  Most of my adult life I have found yoga and massage to be incredibly helpful to my condition and know others with other conditions have found the same. I want to be able to put back what I got out  and help people.

I have good days and bad days, hell I have bad weeks, but am able to work my hours around my condition – I work with my ME these days, not against it.  I see an osteopath regular, practice yoga and pilates, have regular massages and try my hardest to remember to put myself first.

Did you know about your condition before you were diagnosed?

Yuppie Flu, something that people who worked really hard in the City got.  Or worse, something that didn’t exist at all.  When I was first diagnosed it was 1991 and I was only 17.  There was no internet to research on, no blogs to read and most Dr’s didn’t really believe ME existed.

How did you find out further information about your condition when you were diagnosed?

I didn’t really.  I just blindly accepted what the Drs told me – at first at least.

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

I’ve never really used the internet as somewhere to research ME – by the time I started to use the internet I knew everything I wanted to know about the disease.  What I have found helpful is discovering through blogs and twitter the number of people out there with ME/CFS/FMS – being able to find out what works for other people, or just knowing you’re not the only one is incredibly helpful  and healing.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

Working in a busy stressful office environment certainly. When I worked in law I was expected to work to a certain pace every day and for a  certain number of hours a week and I just couldn’t hack that regularity. As I mentioned my last firm before going self-employed was very understanding about this, but ultimately many employers don’t get that sometimes people with chronic conditions are well enough to work for a few hours productively and efficiently but not necessarily well enough to do a long commute into the office every day for example.

I have been made to feel tremendously guilty in office jobs for needing time off sick or shortened hours.  Guilty and resentful, which are not good feelings and only trigger more ME symptoms.

Working for myself I am able to dictate my own hours and as a last resort even cancel clients if my health tells me I have to.  I don’t have to answer to anyone else so I no longer have to feel guilty if I don’t live up to some precedent.  After all the only person who sets that precedent is me.

A lot of people with ME however aren’t lucky enough to be able to go self-employed and want to work, at least part time.  They shouldn’t be made to feel guilty about their condition.  If they are honest with their employers about what’s going on a good employer should help them out.  Sadly this isn’t always the case.

What is your top tip for employers – what could they do to support people with your condition?

Understand that your employee isn’t shirking off or skiving, they are genuinely unwell.  Perhaps make provision for them to go part-time or work one or two days from home (this is of course dependent on the job).  I know one person with ME who’s employers let him go for a nap in the sick bay if he needs to.

What is your top tip for employees with your condition?

Be honest.  The biggest mistake I made was trying to hide it.  Trying to cope on my own.   Also if your job makes you miserable, quit.  Or do what you can to make it better.  Being miserable in your work only exacerbates the feelings of despair that ME can bring.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

Sleep + belly laughs

Do you think you have developed any personal skills or qualities as a result of having your condition? 

I’m brilliant at getting seats in crowded cafes – number 1 rule of having ME, always know you can find somewhere for a sit down and a cup of tea!

What advice would you give people who have just been diagnosed with your condition?

This is a really hard one to answer because it’s such a long time since I was diagnosed that I can’t remember my own reactions.  I will say this though – try to remember that it could have been so much worse.  When I was going through both my diagnoses  I had tests for some really scary things and I’m forever grateful they came back negative.

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

Be kind and don’t make a fuss.  Do some research of your own as if your family member is anything like me we really don’t like talking about it much!

And stick around.  I’m sorry to say I’ve lost a few friends over the years because of this illness, because they just don’t get that it’s not that I don’t want to go out all the time, but I have to prioritise things.  Find some lo-fi activities that your ME diagnosed friend can join in (popcorn and DVDs is always a winner here!)

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!