Dear Mom: Please Understand That My Illness Is Valid and Real

Dear mom,

After our family vacation last weekend, I have become resigned to the fact that you will not accept my disability anytime in the near future. I know my life and health are drastically different than they were five years ago, but that is the joy of living with Ehlers-Danlos syndrome. Every time I try to explain my pain in the hopes you will finally “get it,” I just start crying, so here’s hoping that writing it all down will go a little smoother:

I am not faking my pain. I live every minute of every day in excruciating pain. When I wake up in the morning, at least three of my joints are dislocated. I have to take a stimulant every morning that makes me nauseous and gives me a migraine just so I can stay awake and hold a full-time job. I face discrimination in my workplace and hear snarky comments from my coworkers on a daily basis because I look so “normal,” yet I use a wheelchair. I can no longer have sex with my husband because my skin tears and I contract a UTI each time we attempt anything. But I am used to these things. I have learned to approach life with a sense of humor and be grateful that my husband and friends love me unconditionally.

old photo of a mother and her young daughter


What I cannot get used to and what hurts me the most is your reaction to my disability. I am not being selfish by requesting that we go to wheelchair-friendly places. I am tired of sitting in the car like a dog because you refuse to acknowledge that I cannot walk more than a tenth of a mile before my knees give out. Whenever we go places as a family, I want to feel included and valued. I want you to acknowledge that my pain is valid and real. I want you to be understanding that if I need to stop and rest somewhere, that is OK. Every time I try to explain what I go through, all I hear is “Well, my knees hurt too.” Your knees have never hurt to the point where you have considered elective amputation in order to get your life back. I have started and stopped my SSD application at least five times because I am torn between doing a job I love and doing what is best for my body.

The most important thing I want you to know is just how exhausting it is having to hide my disability from you. This letter is my way of saying I am done hiding. I am still the same goofy, disorganized person I was before I started using a wheelchair. I still love corny romantic movies, teaching and spending time with my pets. I am just a little wiser and braver now. I love myself and wish you could love every part of me too. I hope that one day we can mend our relationship and value each other as individuals. I love you.


Your daughter

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