4 Things I've Learned About Fighting Ignorance Along With My Disease


We have all experienced ignorance about our illnesses at some point. Everyone has their story of being told they didn’t look sick or disabled enough for something. Now more than ever, we have to be willing to stand up for ourselves and advocate for our diseases. I don’t know about you, but I’ve found that most doctors can’t even spell Ehlers-Danlos syndrome correctly. Nothing will change, though, unless we are willing to use our situations as conduits for that change. Here are some things I have learned about fighting ignorance along with my disease:

1. Just because people don’t understand doesn’t mean they don’t want to. Some people ask me inappropriate questions, such as “If you are so sick, why are you working?” I don’t think they are saying it out of malice, although I used to. I think the best thing to do in this situation is to try and help the person understand that your illness doesn’t necessarily have to limit everything you do. I have found that people asking these types of questions are usually just trying to understand. Use the opportunity to open up a conversation, instead of going on the defensive.

2. I was recently in the airport and had a wheelchair and was reported to the gate agent by another passenger because I left my chair to use the restroom just across the hallway. I was in a boot cast and this lady thought it was inappropriate that I got a wheelchair if I could clearly walk. The gate agent was very kind about it and told me I was allowed to do what I wanted, but the chair would still be there if I needed it. The lady was furious and started yelling at me, telling me that there were other people that needed the chair more than I did. I calmly told her that I had the chair not only for my foot but for my heart. She quietly walked away while muttering under her breath about me.

I was not going to change this woman’s mind about me and picking a fight in the middle of an airport would have been more taxing for my body. I have found that being calm in these situations are usually better than getting all fired up. Also, her behavior made her look bad and by rising above I preserved my self-dignity.

3. Knowledge is the best tool in fighting ignorance. When a doctor asks me what Ehlers-Danlos syndrome is, I kindly give them the information about it from the Ehlers-Danlos Society page (it’s a nice little pamphlet). I also explain what it means for my treatment and my body. The more we educate, the more people are going to know. Now, the only people who are truly going to get what we are going through are people in similar situations. But we can try and make the learning curve a little less steep by promoting awareness and education about these rarer conditions.

4. Finally, if you get angry because someone said something ignorant or offensive to you, let it fuel you in a positive way. Let the fire of advocacy burn, use the rage to blog, write articles, and share what made it ignorant and offensive about it with them (if you can).

We cannot fight fire with more fire in these situations. It doesn’t do anyone any good and is usually rougher on our bodies and psyches than the offenders. We need to fight the fire of ignorance with education and advocacy. Meryl Streep did an excellent job for all of us with disabilities at the Golden Globe Awards. She called out the ignorance, brought it out into the light, but also educated on why it was so wrong. Let’s use her as an example and fire ourselves up to fight ignorance as well as our illnesses.

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