Rare Disease and Chronic Illness – How to React to Ignorance

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Let’s be honest, we have all heard people say things that make us want to punch a wall. I can recall a few situations in particular where I am not exactly sure how I kept my cool. Especially during the times I was experiencing roid rage. But how do you respond in these situations? I look at them as a chance to educate the ignorant. 

These are a few of the common statements/questions I have encountered and my responses to them.

Can I catch what you have? Is it contagious? This is the one that makes me want to punch a wall. The idea that you can catch an autoimmune disease is just ridiculous. On top of that, because what I have is blood related, people automatically connect it to potentially deadly viruses that have heavy social stigmas like HIV and Hepatitis. My response is usually along the lines of “you can catch what I have equally as much as you could grow platinum blonde hair from being in my presence.” This usually disarms them to the point that they will abandon the conversation. What they don’t realize is they are saving their life by not asking me anything else that is so stupid! You can think of something equally as tart. Perhaps relate it to them becoming a fan of a rival sports team, an astronaut, etc. Most of the time people who say this don’t really know you well, and they don’t have any business saying this to you in the first place.

Just eat ____, my ____ did and they are cured! I blame Dr. Oz for this one. People assume that magical foods or pills will cure you of your disease. They will give you a story about some long distance relative who solved all of their problems by eating 35 lbs of vegetables at dinner. Or they will try to sell you pills/wraps/shakes/etc. I’ve gotten to the point where I just tell them I follow my doctor’s orders since he is an expert in my rare disease but I’ll be sure to mention it the next time I see them. This usually stops them from talking about it further.

One disclaimer: please do not attack supporters of medical marijuana. There are a lot of studies being conducted on the benefits and some rare/chronic patients have found relief. If you don’t agree with it, that is okay. Just understand people outside of our world who support research in this field are helping us in the long run. I am not a fan of recreational drug use, but I do believe marijuana has a place in medicine. 

When will you be cured? I enjoy the small-mindedness of this question, if only all of us could be cured! This is where I usually say something along the lines of “my rare disease has no cure and the treatments have horrible side effects. Rare disease patients are constantly advocating for more research and funding in hopes of finding a cure.” Healthy people don’t understand the gravity of our situation. They don’t realize that it isn’t as simple as going to the doctor and being prescribed something that will make us better. These issues are for life, so this is an opportunity to educate them on that.

Feel free to leave a comment and add to the list!

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