Employment and CD; A lesson in how to not handle it properly

Hello, there is another thread that touched on the issue of dealing with full-time employment and living with CD. I want to relate my story about how I screwed up my employment last year in the hopes that it will help anyone else.

A brief history about my CD: I was diagnosed in 2002 after several years of symptoms, requiring a resection surgery. After a few years of remission, I started getting indications the disease was coming back. Generally, my symptoms show up as pain in the stomach, bloating, and vomiting due to some type of obstruction. And, always there is a lack of energy. I'm at the point now where I seem to get widely varying levels of flare-ups about once a year. So far this year, I haven't had it too bad. That was not the case last year, when a particularly bad flare-up caused me to lose my job.

My symptoms started to show up around Dec 2009/Jan 2010 and included the typical bloating and pain. My first reaction is always to stop eating and get plenty of rest. Some days/weeks I was fine, but then I'd have a set back for a day or two. As winter wore on, I started to have to take days off of work. Otherwise healthy, I had enough sick time that it wasn't that much of an issue. But, the work started to pile up and when I did work, I had to put that much extra effort into getting stuff done.

The first mistake was not seeing a doctor about it. It was deceptive, though, in that I would be fine for a week or two, then bad for a day or two. I always thought that it was going away for good afterward.

As the sick time piled up, I felt it was time to communicate with management and HR. They knew I had CD, but I wanted to see what my options were and to manage the day-to-day expectations of my duties. I began seeking medical attention at this point, as well (I was new to the area and needed to jump through all the hoops to get a gastro-doc). The flare-up took a turn for the worse with increasing frequency and increasing symptoms, and I started missing 3-4 days of work per week, culminating in a 3 day trip to the hospital in April.

At this point, HR wanted a written note from a doctor saying I was okay to return to work before they would let me come back. They also asked me to get some sort of documentation covering future expectations for living with CD. In between days of being sick, I was fully functional, so getting the doctor's note to come back to work was not an issue. Getting the note for future issues was a problem. The doctors refused to provide this as they considered it an "open-ended" doctors excuse, which would be open to abuse. I tried to negotiate, saying I needed some sort of doctors statement informing HR of what to expect from this disease. One response I got from a receptionist at a doctor's office was to "have them Google it."

My symptoms came back a few more times after my hospital visit. HR once again required a doctors note before I could return to work. I failed to get an appointment and after 3 days of missed work, I received a letter from my employer saying they assumed I quit. Not surprisingly, the symptoms went away for good shortly after that. I've been unemployed and off insurance ever since then.

Lessons learned:
I needed to be more proactive with both the doctor and my employer regarding educating them on the others needs. The doctors needed to understand what HR wanted and HR needed to understand what the doctors would provide (and not provide). My understanding is that they are not allowed to talk directly to each other regarding a patient (me). So, I needed to act as a go-between, something which I failed to do.

Don't wait until you get sick to attempt handle issues that come up with living with CD and being a full-time employee. I vastly underestimated the amount of bs and hoops to jump through when dealing with HR, doctors, and insurance. This is a major side project and requires a lot of leg-work. It would be much better to do this when healthy, rather than dealing with both it and the illness. Not sure exactly to what extent this will take when I do secure employment in the future, but I do know I'll be more proactive about it with my employer and be more assertive with doctors regarding the employers needs. Just remember that doctors don't want to learn anything about HR stuff and, likewise, HR doesn't want to understand what living with CD entails. You have to figure out how to break these paradigms to get through to them.

Hope this helps,

Bryan

Update:

I recently managed to get hired as a temp with a good non-profit company. If all goes well, I could become full-time with benefits after 90 days.

The bad news is that my health deteriorated the moment I started working last week. I felt minor symptoms then and was able to cope fine. Over the holiday weekend, I got plenty of rest and felt 100%. Then, yesterday, I had to leave work early 'cause I was blocked up and started to feel nauseous. I resisted as long as I could, but had to ask to go home early. After a nightmare ride home on public transit, I managed to hold down everything until the moment I walked into my apartment. I didn't even have time to take off my shoes when I lost it (I do have a bucket handy for just such situations, so no mess). I got a lot of rest last night and feeling better now, but I'm still at home recovering. I haven't had any solid food since yesterday, but I'm going to see how some eggs and toast go down. Hopefully, I'll be able to go in to work later today or tomorrow.

It's obvious to me now that my symptoms are linked to activity level, not necessarily stress. I've been more or less symptom free for about a year, since I was last working full-time. It seems that there is something permanently wrong with my intestines that only goes away if I'm not very active. If that's the case, I'm not sure what to do. I need to be a reliable, productive employee at my job to have a hope of getting full-time status with health benefits, and that won't happen (if it does) for another few months. I fear that I'm going to need surgery to fix whatever is the problem, which will put me out of commission for 6 weeks.

I filled out an application for the Oregon Health Plan (Medicaid), but that might not be approved and it takes as long as 45 days for them to respond. Not sure what else I can do. There might be a way to get a free colonoscopy and/or CT Scan, along with the labs and meeting with the specialist. Basically, if I can't get treatment now, and my symptoms persist, I'm screwed.

Bryan:

I read your full story and I can understand how you feel. We are kind of similar, because I probably had a bowel obstruction last night with all the pain and nausea, and I went to the hospital ER. Today I am staying home and rest. I plan to return to my work tomorrow.

I am married and always want to make my wife happy. We bought a home last month. The house was in poor condition, and needs a lot of repair work. When I was interviewing and selecting contractors, I used up a lot of my vacation time. The house still needs a lot of work and I am stressed.

When you were let go of your last job, why didn't you apply for COBRA? Although I am in my 40s and have a small kid, I still feel close to my parents (who live in China). I know when worst comes to worst that I lose my job and insurance, I will be returning to China, to be close to my parents.

Good luck to you.