One of the hardest things for anyone with Crohn’s disease to face is conveying to someone that the illness is a disability. There are two main reasons why.
Unlike the employee who must travel from one cubicle to the next on crutches, a Crohn’s patient usually has no visible physical problem. It’s the invisible ones that do us in – pain, diarrhea, cramping, gastrointestinal bleeding, obstructions, adhesions, anemia, fatigue – the list just keeps on going.
The other stone wall into which most Crohn’s patients collide sooner than later is the fact that any physical and emotional limitations from the disease are intermittent. The question of whether inflammatory bowel disease (IBD) actually ever goes into remission instead of just dialing down a notch or two periodically will be hotly debated until someone finds a cure.
When I was finally diagnosed with this illness in 1979, after many years of suffering and a dozen or more unremarkable barium studies, the gastroenterologist told me the average amount of time between onset of obvious symptoms and diagnosis was 7 years. In my case, it was 23 very, very long years.
There was no doubt I was at times disabled even though nobody had any idea of what was wrong with me. In the middle of meetings, just an hour after I had eaten lunch, my “stomach” (actually my small intestine) began to growl so loudly that others joked about it. I had to make quick exits to the restroom. Every few months, I ended up in the emergency room with what I now know were partial obstructions and horrible pain that surpassed even labor and delivery. And every few weeks, I was off work, which hurt my career to some extent.
In 2003, I had my fifth surgery for Crohn’s disease. Due to the immunosuppressive drugs I had been taking since 1992, this time, my incision became repeatedly infected, causing me to be off work 4 months. Less than a year later, I took a very early retirement that barely pays the premiums for my health insurance because I no longer had enough stamina to work full time.
At the time, I faced a decision about whether to try for a disability retirement. Since evidence of my ordeal was hidden under a business suit, I don’t think any of my Federal co-workers took my inability to work seriously. Neither did some of my doctors. My questions about trying to get a disability retirement from my Federal job – usually a lot easier to pull off than getting a disability determination from Social Security – fell on deaf ears.
Why? Because I didn’t look sick, and because I was still able to work part-time now and then. In their view, when I was able to work even an hour, I had no disability.
Wrong.
Until late 2007, trying to get the Social Security Administration (SSA) to award a Crohn’s patient either of two categories of disability status took about as much effort and considerably more legal assistance than a backpacking trip on Antarctica during the winter.
However, according to the Crohn’s Colitis Foundation of America (CCFA), several aspects of having IBD can now make a patient eligible for a disability determination. It states that the SSA’s Handbook for Physicians contains a list of several impairments that pertain to Crohn’s disease. Among them: diseases of the digestive system that result in patient impairment because of nutritional problems, malnutrition or weight loss, surgical diversion of the intestinal tract (including colostomies and ileostomies), IBD documented by a variety of tests, short bowel syndrome after surgery and certain chemical deficiencies detected in blood work.
The CCFA web site provides a concise list of the practical steps patients need to know regarding potential Social Security benefits and exactly who is eligible. It also provides links to more frequently asked questions and steps to follow when SSA denies a claim. It also clearly explains the difference between the two types of determinations–SSI and SSDI.
In order for a Federal employee to earn a disability determination, he or she must first flunk qualifying for Social Security disability benefits. In the event that the Crohn’s patient does in fact qualify through SSA, any retirement benefits are subtracted from the Social Security payment awarded. Either way, the individual is subject to annual reviews of the disability.
After all was said and done, I might not have really ended up with any more income than I presently earn from part-time work by attempting to gain formal disability status. And since I am able to work some of the time, keeping that status would most likely have been a greater pain than the disease itself.
Reference:
- Crohn’s Colitis Foundation of America (CCFA) web site
