Had since I was 13-15, no one believed me. My mom took me everywhere possible. I did 4 sports a year, so that right there was the perfect excuse for DRs to use.  I gave up for a few yrs

 But I knew my symptoms weren’t ” normal ” . I did this on my own w out my mom ( she was there all thru high school and college appointments ) . Got turned away by at least 15 Drs. ( all “specialists”  )
Finally saw 1 female Rheumy, when I was 29. She was amazed at how much evidence there was in my xrays, MRIs, blood work, HLAB27 positive. And she looked back at all my old xrays /MRI and said it’s been there and obvious deterioration since age 15 .  someone finally believed me. She said young females are blamed for hormones, growing pains, depression and anxiety as the cause.

 Fast forward to age 32, and I use a cane to walk sometimes.

 I have had failed relationships because without a DX, they thought all I did was complain,  lazy, angry and crazy!  ” You’re always bitching about something ” ” my back hurts, too” ” get up and do something ” ” you’re so negative” ” you don’t do anything ” ” it’s all you ever talk about ” ( my pain)  ” you barely eat ” ( bc it causes inflammation )
I also truly believe trauma has advanced my condition.  When I was around age 13 my dad and gramma were dying in the hospital at the same time.  When I was 21 my gram died. When I was 23 my dad died, and when I was 27 my sister Had a brain injury and died When I was 30 ( she was 28).
 I omitted all of this trauma info because I KNEW that’s all that DRs would blame it on this.
An emergency room Dr. even blamed my hip pain on sex when I was 15 and still a virgin. My mom took me bc I was in tears and couldn’t walk bc of SI pain. The Dr made me get naked an inspected My vagina and he told my mom it was from sex! And wrote me a script for numbing gel for my vagina. I cried bc I was so embarrassed, luckily my mom never  dropped that script off bc she believed me. I am still traumatized by that.
I do not trust male Drs. I have a fear of being rejected, not believed, made to feel like I am lying.
 My sister also had all of the same symptoms. And saw just as many Drs and never was DX. I am saddened that she died without knowing that it wasn’t all in her head. I was the only one who believed her.  I wasn’t DX until after she died, otherwise I would have made her see the same Female Rheumy.
This is an insanely painful and yet invisible disease.  Did I mention that it is painful ? It consumes your entire life.
I will never have kids. My body is in too much pain to even consider being pregnant. It would be unfair to my kid, as I could not keep up. I would never ever want my child to feel like this.
I have 3 dogs, and a boyfriend. We sleep in separate beds bc my body is too painful to be accidentally bumped against at night.
Thank you for reading this glimpse into my invisible diseased life !
New York, United States of America

One Response to “Melissa”

  1. Dear Melissa,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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