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How did your A.S diagnosis affect you?

I had an idea that I might have A.S through my own research when doctors wouldn't help me. When I actually put A.S out of my mind and decided not to bring it up to my new Rheumatologist because I had been told I needed to stay off google one too many times by previous doctors, family, and friends. I waited 5 years for an answer, and I was just told I have Ankylosing Spondylitis a few weeks ago. I feel an overwhelming number of emotions. First, I wanted to tell the world it was real and part of me was happy (is that weird)? but now I just find myself researching it all the time, I want to know everything about it, and I still haven't told my family. Yikes!! I find myself feeling isolated from everyone and just lost in the depths of the internet finding others out there going through the same thing, so I don't feel so alone! I feel they won't be very much support, but I really want them to know because I don't want their kids to inherit this terrible pain in the A.S. Anyway, what were some of the feelings you have had after your diagnosis?

Lacie

  1. Hey Lacie how are you feeling today? This was me 5 years ago when I was diagnosed im glad you finally got an answer but I’m sorry it’s AS. So many emotions that I didn’t know what to do with so I understand, Your feelings are valid I don’t think it’s weird at all. When your diagnosed with an incurable disease it’s def a shock and something that takes a while to adjust to. When your ready to tell your family i hope that they will be supportive. I told my mom right away because she was my rock through it all through all of my appointments through all of my symptoms she was there by my side so it was easy for me to tell her the rest of my family found out a few weeks after my diagnosis I allowed myself time to process it all before sharing. My family didn’t say much wasn’t very supportive, I only had my mom unfortunately I lost her 2 yrs ago so now I really only have this community and those that I found on social media that also have AS or other chronic conditions who truly understand what I’m going through and that’s ok for me Because they have become family! Keep us posted on how it goes when you do tell them. Sending positive vibes 💙 Nadine (Community Member)

    1. Hi. I just found out a few weeks ago that I do not have fibromyalgia. In one visit to the doctor I got the news that I am pre diabetic and have arthritis through my neck, upper spine and right hip and then two weeks later after more blood tests and the meds not working they tell me I have A.S.
      For two days I just cried. I eat very well. I exercised but these last 3 years I've been sick with one thing after another.


      I feel relief to know what I am facing but I am also grieving what I "think" Im going to loose. AND Im scared. I don't have a husband to hold me up when Im down. It's just me. I have some friends but they live their lives as they should.


      Any time anyone needs to chat im here for you because I need it too

      1. My first reaction was "What?" Then relief that at least I had a name for it. & not "JUST a back ache or joint pain" accompanied by a look that one would give a child with a boo-boo ( as some in the medical field tended to do). Years of research followed along with learning how to handle it as well as other immune deficiency conditions and control myself. My life turned upside down & once my lifelong partner & love passed away, an overwhelming sense of loneliness and a serious distrust of most people entered my life. I'm still learning everyday but I refuse to let it be in complete control of me. I prefer a compromise of, "yeah I'll stop doing it that way, but will keep trying something easier... ".

        1. Hi Lacie
          I was diagnosed last month. I had so many mixed emotions. In the beginning I felt like at least I know what has been causing the pain. Later on I went on the spree on the internet reading so many things just like you. It will pass once you understand the disease better. There are times when I am feeling very sad, sometimes I am angry for the pain stiffness, other times I just can't get myself out of the bed. There is flare-ups with AS. I found a doctor today that was explaining all the ins and outs about the disease. I must say I feel more at ease today. The past few weeks has been hard and very confusing because I have not learned the patterns of the flare-ups. I have learned from the doctor today that you need to look for the pattern and then with medication it will go smoother as well as with exercise. I am not at smoother yet, but I am hoping and praying to get there.
          Take care.
          Astrid

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