"Don't let your condition rule you. Rule your condition!"
"Nobody feels like you do, and nobody knows what it’s like to be you. Don't let other people (including doctors) tell you how you feel and what is best for you, especially if you don’t agree. Be an advocate! If you have knowledge about your condition, share it! Every little bit helps."
Read the story of a young warrior battling Ankylosing Spondylitis, spreading awareness and extending amazing support to all the spoonies!
Jed Finley's Story
I was introduced to my chronic illness when I was 12 years old. I was active in sports, always played outside, and was in pretty good shape for a 12- year- old. I played American Football, Ice Hockey, and Baseball. I wasn't good at any of them, but I put everything I had into it. I wasn’t a quitter and had no regard for my body. I would wake up sore from time to time. I broke a few bones, had a concussion or two, and plenty of strained muscles. All in the life of a mediocre pre-teen athlete. However, in late 1993 my body felt different. The pain I felt was different. I woke up sore for seemingly no reason, my knees, hips and ankles cracked as I walked. You will often hear chronic illness patients say this line: “I know my pain, and this is not typical”. This pain was something new. I don’t remember if I complained or if my parents noticed something was different, but we all agreed, this was something new. I don’t remember much from that time. Probably a combination of concussions and brain fog, but I ended up at a Rheumatologist office. He diagnosed me with Ankylosing Spondylitis.
Many people will now go on to tell you how this diagnosis changed their life, and they did research and started all these treatments. However, I was a 12-year-old with a “Live and let live” personality. This information did not change my life one bit. At least I don’t remember anything changing. Chances are if my mom was worried about me, then it only made me worry less because I didn’t fall into her drama. I always felt the need to prove her wrong. There wasn’t much in the area of treatment in 1993, at least not for a 12-year-old. With all the side effects of liver and kidney damage, our medications promise, I imagine my doctor didn’t want to put me on any of those. I usually tell people my official response from my doctor was “Sucks to be you!”
I was diagnosed in 1993 and literally did not do anything to treat it until 2013 when I finally got health insurance from work. Up until then, I was denied any insurance right away because Ankylosing Spondylitis doesn't sound like something insurance companies wanted to deal with. Many of them, I could tell, didn’t know what AS is, but it was on a list, so they said no. But, like I said, up until then I chose not to let it bother me. I ran Cross Country in high school and college, and I walked 5 miles a day for many years after that. I told people that if I were going to hurt, I would instead do it to myself. Mind over matter worked great for me while I still had control of my body. I later would figure out ignoring my body and pushing through the pain was a terrible idea. If not for the AS, but all the additional damage I did which adds to my chronic pain. I should have gone to a doctor sooner to slow the progression. These are the things that run through my mind and every chronic illness patients. Could I have done more?
I get through my day mostly on the support of others. I hate saying this, but you can’t always rely on me. I can promise I’m going to do something, only to wake up in more pain and unable to move. Why the change? I don’t know. I don’t think anyone really knows. If I could find a way to guarantee strength, stability, a sharp mind, I totally would do that because I hate letting people down. Unfortunately, I am unable to do that at this time. Therefore, I need a lot of understanding and support from my family and co-workers. I also know my limits, and I don’t promise beyond it. I don’t pick up my nieces and nephews, I don’t work with my students on the floor unless I absolutely have to, I don’t carry heavy boxes, and I really can only manage one shopping location, so if you want to visit many stores, I might need to sit this one out. The important people in my life understand this which is comforting.
In 2007 Facebook introduced “Groups”, and I saw a great opportunity. I created the support group “Living with Ankylosing Spondylitis” as a way to connect with other AS patients. As far as I knew, I was the only person in the world with AS. I was amazed when other people started joining. Now the group has over 14,000 members from all around the world. We discuss treatments, doctors, daily struggles and daily successes. I take great pride in facilitating these conversations and knowing I'm doing something to help my fellow AS brothers, sisters, and non-binary siblings. Though my group and my account on Twitter I have met so many amazing Spoonies with AS and every other medical condition. We all work together and spread awareness for our conditions and support each other in surprisingly unusual ways. By helping others live better, live better.
My message to my Spoonie brothers, sisters, and non-binary siblings is to take charge of your condition. This can manifest in many ways. You can become an expert in your illness. By that, I don’t mean go out and get a PhD in chronic illness, but to feel like and act like the #1 authority in living the life you live. Nobody feels like you do, and nobody knows what it’s like to be you. Don't let other people (including doctors) tell you how you feel and what is best for you, especially if you don’t agree. Be an advocate! If you have knowledge about your condition, share it! Every little bit helps. You might be the first person with the condition to make a symptom or a treatment known to the public. Stand up for your chronically ill siblings. Don’t let your condition rule you. Rule your condition!