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
“Either get busy living or get busy dying. The choice is yours.
Hey @JRobb
Hope your day is going feeling well. Hope today was a better day today.
Nicky (Team Member)
- Thank you for the kind words. They mean a lot to me. Something you mentioned, “as you pull yourself up and out of this difficult time”, it reminded me of the day I decided to get back in this game of life. I was rewatching a movie I had seen many years before. I really wasn’t so much watching as I was listening since I already knew how the movie’s plot played out. Anyway, it was a good thing that I was listening because what I heard was something I had forgotten about from the movie. When I heard this line in the movie that day, something inside me took notice. In fact, it moved me so much internally that I stood up from the couch with a renewed vigor. It was such a simple line, but at that moment it was anything but simplistic. I was diagnosed in Feb. of 2022 with extensive damage already present. In one day, my “bad back from sports in my youth and a moderately bad automobile accident around 2001” had become this irreversible, incurable, debilitating disease. I can honestly say that I had difficulty processing this news. I had successfully kept my diabetes under control for the last 14 years. In 2020 I had survived a 51 day life or death battle with Covid 19, and had spent numerous years fighting depression and panic attacks that stemmed from childhood physical and sexual abuse.
It took me about 2 weeks of mulling it over before I just broke. I guess I just felt defeated. The description of this diagnosis from the doctor sounded like a loss cause, a hopeless situation that could only worsen over time.
So, I simply just gave up. Stopped managing my diabetes, quit trying to be fit and healthy. Started withdrawing from activities with friends and family. Lost interest in my hobbies and previously enjoyable tasks. I think I just couldn’t identify what about life was still worth all the effort.
Well my A1C got way higher than it had ever been. Gaining weight and getting obese happened as well. Seemed like all my time away from work was spent just eating and sleeping a lot. Intimacy went extinct and so did being able to find joy in anything and anyone.
It has been a little over a year now since that diagnosis. I’m still here and have started to make some changes and some progress in coping with AS. Restarted mental health counseling again. Agreed to try Humira and make attempts to be physically active when I can. I think I just finally decided that something will eventually kill me, but I be damn if I will let it be AS.
@JRobb you are made of tough stuff my friend.
I can't help but feel emotional reading your post. It's such a lot to deal with, both the physical symptoms AND the mental load.
I think a lot of people will relate to those feelings you describe, I know some of it struck a chord with me and took me back to those early days post-diagnosis when everything just felt hopeless.
This, though, is so awesome: 'I think I just finally decided that something will eventually kill me, but I be damn if I will let it be AS'.
So good to hear about your steps forward with making changes, seeking out support, doing the hard work. None of it is easy, but it's so worth trying.
I'm sending all my best wishes that things get easier for you as you pull yourself up and out of this difficult time. I'm cheering for you and sending support!
Please keep sharing your progress with us here, it really helps others. And thanks for the honest reflection.
warm wishes, Anne-Marie (Patient Leader)
Altho I had been told I had the gene for AS, I was not given the imaging I needed to verify that I have active AS. So I did nothing. I was officially dx this last July - with more testing than I've ever had. That day I found out my thoracic spine was fused. I was horrified! I was scared! Because we have real winters here with snow and ice, having AS makes me fear getting around town so I can get my exercise in. Thank heavens for water exercise. I also did computer searches to see what I am facing. Joined the AS Association. I got a medical id necklace. I can cope emotionally so much better now than I could at first. I also found a great physical therapist and worked on walking straighter. I still have pain at night and I hope that decreases soon. I haven't found patterns with pain yet, but I'm hopeful. Hang in there, It will get better!
