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!

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