Crohn's Stigma comes from Ignorance and Misinformation

Is there a stigma to Crohn's? That's an interesting question. When I was first diagnosed, no one I knew had even heard of Crohn's. The general public is slowly being educated to the fact that inflammatory bowel diseases (IBDs) exist, and that there are medications for them, but most people are still ignorant about the disease and its symptoms.

In many ways, Crohn's is an "invisible" illness. We Crohn's patients don't have spots to show we're sick. We don't usually need wheelchairs, and in general, even during flares, we don't look the way the public thinks "sick" people should look. I've been told many times how well I look during the times when I'm feeling the worst. Even doctors, who should know better even if they're in different specialties, tell me I must "be feeling better" because I look so well. Try telling your teachers or your employer that you're sick; you'll hear "you look fine to me" more often than you'll hear understanding or sympathy.

If you're well enough to work and tell your potential employer that you have Crohn's disease, you may encounter the stigma of Crohn's. If the employer knows what Crohn's is, he may decide that you'll miss too much work or cost the company's insurance program too much money and choose not to hire you. This is in direct violation of federal law, but it's usually not difficult for an employer to give you a different reason for not hiring you.

If you're self-employed and looking for individual health insurance, you'll have a very difficult time if you're honest when listing pre-existing conditions. The stigma raises its ugly head again. If you are offered a policy, the premiums may be significantly more than they would be for someone who doesn't have Crohn's disease. Your only option may be a "risk pool" type of insurance; most states have these for people who've been unable to get health insurance any other way, or have been offered only premiums higher than the risk pool's. It still comes with a high premium, but is probably less than the $12,000 a year cost of Remicade TM treatments.

The Social Security Administration has recently recognized Crohn's disease and Ulcerative Colitis as disabling illnesses. This means is that if you are unable to work, you are eligible for Social Security Disability benefits, and possibly for Supplemental Income benefits as well, depending on your financial situation. Actually getting benefits is another story; well over half of the people who apply for disability benefits are turned down the first time. But if you are actually disabled, and many Crohn's patients are, and you keep re-applying and have good medical records, you should be able to get benefits eventually, and they'll back-date them to the first time you applied. If you're receiving Social Security Disability benefits, you'll receive Medicare Part A automatically; that's the portion of Medicare that covers hospitalization. You can pay a premium to get Part B insurance, which covers doctor visits and medical tests, and your premium should be the same as everyone else getting Part B in your state, unless you're penalized for late enrollment. You will still need to find a Part D plan for prescription insurance; your local or regional Medicare office can help you by providing you with a list of the plans available to you, as can AARP if you're an AARP member.

One problem with receiving disability benefits is that disability has a stigma of its own, especially with an "invisible illness" like Crohn's. There are some days when you can function more or less normally, and there will undoubtedly be people who think you're malingering and taking advantage of the system, because they don't know what your life is like during a flare. I've been through this, and probably will be again; the only thing you can do is to ignore them. If you are disabled, you know it; most people receiving disability benefits would rather be healthy and working, although that may be hard for others to understand.

Now that more people have heard of Crohn's, there is likely to be some stigma in the minds of those with "a little knowledge." Some people may be reluctant to invite you to meals, because they don't know what you can and cannot eat. Others may be reluctant to invite you because they may be afraid that you'll spend the entire evening in their bathroom. You can educate your friends, but it's hard to educate the world.

But world education is beginning. Recently ABC co-anchor Cynthia McFadden has spoken publicly about living with Crohn's disease and encouraged people around the country to join in their area's Walk for the Cure for Digestive Diseases. Having a high-profile spokesperson talking about Crohn's will help eliminate the stigma of the disease. President Bush recently signed into law the Genetic Information Nondiscrimination Act of 2008. This act makes it illegal for insurance companies to use your genetic information to set a premium amount or to deny you coverage, and for employers to discriminate based on any genetic predisposition you may have. This is particularly important since the recent discovery of the genetic component of Crohn's disease discussed in another article on Associated Content. Finally, the National Advocacy Conference was held on May 14^th and 15^th of 2008 in Washington, D.C. Patient advocates from 75 crucial regions met to discuss Crohn's, and to meet with legislators who are on the committee working on the proposed IBD Research Enhancement Act.

As the public becomes more aware of Crohn's disease and Ulcerative Colitis, these illnesses should become both less "invisible" and less stigmatized. Spokespersons, legislation, and activism by patients and their advocates have made great strides in the last year, and those who deal with IBDs every day hope that this education will continue, and understanding will grow.