My twin sister and I fought to be believed

Posted February 25, 2021

At 5 years old I remember my thumb and hips popping in and out of place. I would be in horrendous pain but I would keep it to myself. Then I would chat with my identical twin sister then we realized that our pain was very similar. 

At around the age of 13, I decided to research online. Falling into multiple websites of different pain and types of joint problems, I finally found a diagnosis that would describe my pain. I rounded up some courage and saw my family doctor. I kept telling her about my injuries and my pains. She would tell me it was sports injuries, growing pains, or caused by anxiety. After asking five different times for a knee MRI she finally accepted with the help of my physical therapist; two other doctors had refused to give me an MRI. 

The results came in and I had a meniscus tear. I knew it from the start. I tore my meniscus by stepping on a tiny, tiny pebble (my knee twisted). Then after another appointment, I spoke to my family doctor about Ehlers-Danlos syndrome (EDS) and how I’m really flexible. She performed the Beighton test, I scored an 8/9 or 9/9, she said I was hypermobile but she didn’t want to do anything with the pain or send me to see anyone (then for years still trying to convince her to help me, she said it was all in my head). 

My sister was hospitalized not too long ago and I kept telling her to ask to test for EDS, POTS, MCAS, CRPS, etc. The first doctor told her she was in the hospital for pain meds, then she got transferred to a different unit where a doctor didn’t believe her at first. While she was hospitalized I put pressure on my parents to find the right doctor, that’s when they found a private doctor who finally confirmed that my twin and I aren’t “crazy” or “trying to get pain meds” as if we are struggling with addiction.  

Let’s just say that was quite an emotional day because doctors were always telling us it was mental and that our physical pain was nonexistent. I couldn’t believe how long it took for me and my sister, I feel so bad for people that don’t have a diagnosis yet. It was “quick” for me and my sister but for some people, it takes 40 years, I feel so bad. That must take such a mental toll on them. 

Right now the diagnoses I have are, and some are still “pending”: hypermobile EDS (hEDS), POTS, Mast Cell Activation syndrome (MCAS), PTSD, hypothyroidism, overactive bladder, pineal cyst, and chronic migraines – there might be more but there’s so much that I sometimes forget them.

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