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!

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2 responses to “My chronic career – Crohn’s and the professional hospital patient

  1. Pingback: Fresh From Twitter | Crohn's Disease and Ulcerative Colitis:

  2. Pingback: Fresh From Twitter | Crohn's Disease and Ulcerative Colitis:

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