Let Your Doubters Feed Your Motivation in Life With Chronic Illness

So many of us have learned to accept and live with long-term medical conditions and also, unfortunately too often, prove to others that it is real. Living with Ehlers-Danlos syndrome, one of the many invisible conditions, has truly been a challenge to have others understand. We tend to look “normal” to others’ eyes, yet we live with daily pain, uncertainty, altered lives, and so many heartbreaking losses. And then you add that judgment we feel from others and it can just become too overwhelming to take on. Sometimes, it is actually a strange relief to show our disability to others when we are using our wheelchair or wearing a brace. Those visuals sometimes make a difference in receiving compassion, patience, and understanding.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

But we are real, we are trying to learn how to cope, and we sure would like to have others respect this and show compassion instead of doubting us. For such a long time, I kept my sadness and disappointment inside and struggled to try to accept and understand others’ judgment. But I am now done with that and instead have chosen to use those moments to motivate me to speak out to try to educate and correct these wrongs.

I have learned to share the truth in small pieces, for those that want to understand and use this as an opportunity to educate. For example, once I was roughly dropped onto the hospital stretcher and it ended up dislocating my hip. Respect was not given to my advocates that were explaining the need to be careful and to be gentle when moving me. So, due to this lack of taking the time to listen and only judge, I now live with permanent issues with that damaged hip. They chose to doubt my reality and any attempts to understand. So, I took this horror, reached out to the hospital when the dust settled, and share that I didn’t want this to ever happen to another person. I included in my letter to them that I would be happy to run an in-service to educate the ER staff on how to handle one like me. They took me up on that offer and I was able to take those doubting me and turn it into educating others, which resulted in feeling motivated!

Feeling such motivation from speaking out has inspired me to continue to find ways to respond in a positive manner. I hope to keep educating for future respect and to get the correct help when we need it. I write letters to the editor, op-eds, give education talks, write pieces that get published online and in magazines, and even have written two books — all things I never came close to imagining I would take on. It was the doubters that brought this advocacy out in me, to be honest.

I may not be able to change my diagnosis and the future it is bringing my way, but I sure can help speak out and try to help lessen the burden of judgment from others. So please consider joining me and speaking out so we can try to lessen the judgment so many of us experience.