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Audrey_Morelock

519d

I was diagnosed with Ankylosing Spondylitis in 2019 and it has been a roller coaster ever since. How do you cope with the knowledge that your body will continue to get worse over the course of your life?

Top reply
    • Frustrated

      482d

      @aldrwytch thank you for sharing this. It helps me to know that no matter what age and what issues we have we are not alone.

    • aldrwytch

      482d

      I’m 27 and after 10 years of cycling through specialists and all but begging doctors to take my symptoms seriously I just got diagnosed with AS this year on top of various mental health and other conditions…. It’s been really really hard, and I struggle with both pain management and feeling hopeless. I’m really lucky in that I have a therapist who isn’t ableist (I’ve heard some stories, some REALLY are), and we talk a lot about grieving the life I do not and am not going to have, so I can accept the one I do have. We also talk a lot about the balance of accepting that this illness is going to continue to get worse, but also, that my medical future is ultimately unknown. New treatments could come out, my symptoms/issues could change, or any number of other things. It’s something I still struggle with a lot, but allowing myself to truly grieve has been liberating. At different times I’ve been under so much pressure to meet ablebodied standards for school/work/career, to look on the bright side, to not “have a pity party” (ie be upset by my upsetting symptoms), and it left me in a really really dark emotional space that I’m still not out of. I’m still working at it. But allowing myself to actually feel the sadness and anger without guilt or shame has been at least feels like a step in the right direction.

      • Frustrated

        482d

        @aldrwytch thank you for sharing this. It helps me to know that no matter what age and what issues we have we are not alone.

      • aldrwytch

        482d

        @aldrwytch Coping with it all is really hard… but you’re definitely not alone ❤️‍🩹

    • Frustrated

      482d

      Oh ok . I had to stop taking vitamins due to stomach issues.

    • Frustrated

      511d

      It’s a struggle everyday but my faith keeps me going. Lots of depression lately but keep on going. We are here for each other.

    • Mj5

      514d

      Day to day. I try not to dwell too long on the future bc it is unknown. I allow myself to sit with the feelings I have but I try not allow them to consume me. Focusing on the present, the things that are here and now and the things I can do. Celebrating the small victories. Something I have also been trying on my worst days is finding one positive thing I have to be thankful for or happy about. Along with lots of comedy it is a natural pain reliever (reducer is a better word for it) anything that will release the feel good hormones for you.

    • Saums

      517d

      I got diagnosed this year and I’m 23 Right now I’m on medication and I really don’t know what’s gonna happen when i get off it….this year has been one of the darkest days of my life and sometimes i feel hopeless about the future in terms of my health

      • Audrey_Morelock

        515d

        @Saums I’m not going to lie, it is still difficult to wrap my head around sometimes. I am turning 21 in 2 weeks and am terrified. I have found keeping a journal of my symptoms and feelings has been helpful. I bring it to my appointments and get to have a real conversation with my doctor about how this disease is affecting my day to day life.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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