I have Ankylosing Spondylitis. I was formally diagnosed by a rheumatologist in May of 2017, but I've been dealing with the symptoms and trying to figure out the cause of them since the spring of 2013.
My diagnosis has honestly changed my life in both positive and negative ways. When I started really experiencing symptoms of hip and back pain in 2013 I was a junior in college and playing division 1 rugby. I spent tons of time with the athletic trainers, sitting in ice baths, and hobbling around campus on crutches to take pressure off of my hips to help relieve the pain. Once I graduated college I stopped playing and hoped that would help, but it didn't. I had gone to countless doctors without anyone being able to find a true source of my pain, so at that point I have just accepted that this is something I would deal with. I was hesitant to make plans that involved any sort of physical activity because I never knew if I'd be in the midst of a flare, and I lived my life around "but this might aggravate my hips or back." Finally in February of 2017 I had such a bad flare that I could barely get out of bed and had to call out of work sick because I knew I couldn't even walk to my car to get myself there, let alone get to my desk on the 4th floor and sit there all day. I decided to try again to figure out what was wrong, and was then diagnosed with Ankylosing Spondylitis. My doctor told me that with the rapid progression of my disease, without medical intervention it was likely that my spine would be totally fused together by the time I was 35, and my mobility would be severely limited. This hit me hard and I dealt with a lot of stress and anxiety about how my life would be changed. I was terrified of what my future might look like, and terrified of the potential side effects of the medications that my doctor wanted me to go on. I decided that the possible medical side effects weren't as scary ass the potential to spend the rest of my life with limited mobility, so I started medication. I now feel better than I have in years and I am so thankful for that. I don't worry anymore about going for a hike or signing up to run a 5K because I don't get random flares anymore and my pain is completely managed. I do still deal with a lot of anxiety because of this, and frequently fear what my future might look like- how long will my medication continue to work? Will I have negative side effects? What if it's only masking my pain and my AS is still progressing? This disease has also given me such a great appreciation for my body and my health- I'm exercising and in better shape than I've ever been and I'm eating healthier than I ever have.
One thing that I wish people knew about my illness is how much it effects me even when my symptoms are controlled. Over the ~4 years that I suffered symptoms and was diagnosed my disease progressed to a point where I have partial fusion in my Sacroiliac Joints. As a result of this I still have a hard time with certain motions and exercises, and still have pain if I sit too long. Even on medication I have days of fatigue and as already mentioned the anxiety of what the future holds can be almost crippling (I do have someone I talk to about this, which I highly recommend to anyone who is learning to cope with a chronic illness!). I wish people understood that just because I'm on a medication and not in so much pain I'm not all better. This is something I will live with and deal with forever and support, compassion, and awareness are hugely important to me and everyone else dealing with a chronic illness.
I've become an advocate for myself. I've learned how to speak up and tell doctors, friends, family, etc. how I'm actually feeling. I've learned SO MUCH about autoimmune/auto-inflammatory and other chronic illnesses. I've learned to love and take care of my body and my health. I've learned to try and worry less about what the future holds, and appreciate every healthy day as I have it.
The advice I would give to someone else who was recently diagnosed with a chronic illness is to learn- knowledge is power when we often have to advocate for ourselves. And find other people who you can relate to and talk to. I struggled with this alot- the internet is a great place to find support, but there is also a lot of negativity that can really bring you down when your already struggling, the trick is to find the happy medium.