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Understanding AS

My name is Andrea (39) and I live in New York (not the best place to live with AS). The weather here really impacts my daily life. When we go from 76 degrees to 42 and rain, I can feel the change in my body. I can feel it in my spine, my hip, my ribs and even in my left eye.

Finally receiving a diagnosis of AS

When I was 28 I broke my L5 as I was walking from the living room to the kitchen. I just fell and from there my life changed dramatically. It wouldn’t be till 5 yrs later that I finally got surgery to and was told nothing about the AS.

It wouldn’t be till years after that I finally got blood work and was told I have the markers for AS and that there is no cure and basically left it at that. I am now being more proactive in learning about this disease and am finally working with the correct doctors.

Awareness for ankylosing spondylitis

I just want more to be aware of this disease. People look at me and think “there is no way she hurts like she says she does” or “she wouldn’t do the things she does…”. But the reality is I am going to hurt if I do them or not and I can’t allow this disease to stop my life completely.

They don’t hear me crying at night to my husband because my ribs hurt and when I can’t sleep. They don’t see the hours of stretching I do to keep my body from becoming completely stiff. They don’t see my medical bills that add up from new therapies or medications that I have tried.

What you can’t see still hurts me

I get that it’s hard for people to understand things they cant see, this is why I am starting to be more open and expressing exactly how AS impacts my life and in turn, impacts the ones around me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Lawrence "Rick" Phillips moderator
    4 months ago

    Hurting what cannot be seen is a 100% accurate assessment of AS. Or as a man I know commonly says “if not for the pain this disease woudl not be so bad.”. He said a mouthful there.

  • AngelWings
    4 months ago

    I know the feeling when someone says there’s no way you hurt that bad. The last person to say that to me was my brother. I looked at him as said, how do you know how much pain I’m in, just because I don’t say it a lot, or you don’t see me wince with every step I take doesn’t mean I don’t hurt. He put me down for being on the meds I’m on, telling me how much damage it was doing to my immune system and my filtering organs, I said without these meds I’d probably be On Disability unable to work or move around very much. I said, I’m doing what I have to for me, when you hurt like I do, you can make the choice for yourself how you deal with it, but this is what I have to do to function and be able to live. So back off bro. Lol
    I know he doesn’t understand the amount of pain in my life, how could he… my sister understands, we are each other’s support. I have an aunt and 2 uncles that understand… sorry I got long winded there 😳😜
    I hope you have more good days than bad live life to the fullest

  • Jed Finley moderator
    4 months ago

    Andrea, that was so well written! Thank you so much for sharing! As an advocate, I am so thrilled to see you are more willing to be open and honest about your illness. We always need more patients speaking our truth.

    It’s funny you say “she wouldn’t do the things she does…” When everyone was dumping buckets of ice for ALS. I dumped a bucket of hot water for AS. Some guy told me if I actually had AS I wouldn’t be able to lift the bucket over my head…

    That’s why we need to educate those around us.
    Thanks again for writing this.
    Jed

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