Jed Finley is the founder of Living With Ankylosing Spondylitis, regular contributor to AnkylosingSpondylitis.net (profile), local AS Support Group Leader, blogger at Jedi Mastering his Chronic Life, and AS Superstar.
When he was diagnosed with Ankylosing Spondylitis at the age of 12 it was during a time when children of that age were not prescribed medications and the amazing treatments we have today hadn’t been invented yet.
In 2007 he founded the Facebook-based support group “Living With Ankylosing Spondylitis” as a way to connect with, learn from, and provide support to his fellow “Spondys”. By 2019 the group surpassed 20,000 members and grows by a few hundred every week.
When he isn’t advocating for AS, Jed is a Special Education teacher at the elementary level working with kids with Autism. He is one of the support group leaders of the St. Louis chapter of the Spondylitis Association of America. Jed has a beautiful family in a wonderful house he helped renovate with his amazing wife and four fur babies.
I was diagnosed when I was 12 years old after a slow progression of joint stiffness and then a sudden onset of muscle weakness and pain. Because I was so young, there wasn’t much else I could have had, plus my Rheumatologist knew what he was talking about.
Biologic treatments like Humira and Enbrel are probably the most important part of the treatment of AS. I also use NSAIDs and DMARDs in my plan of attack.
Have you had any adverse reactions to medications or treatments?
Other than one that made my hair fall out, no. So far, my medications have either been kind to me, or have not worked at all.
Can you explain a time a doctor/health professional did not help you?
The second Rheumatologist I went to told me at the beginning of our first appointment that I could not possibly have AS. I didn’t fit the picture of what she was expecting and ,at first, it was very difficult to get her to treat me. When she did finally treat me, she cut my doses in half and suggested I take Tylenol. She was not my Rheumatologist for very long.
Can you explain a time when a doctor/health professional did help you?
This doctor I go to for other health issues is fantastic. He is probably the most knowledgeable person in healthcare. He has done his research and has a set protocol to treat basically anything that ails you. If you say something doesn’t work, he finds a new plan. Basically, he does not want to send you away without having a multi-step plan. There is no chucking pills and “see you in 4 months”.
What would you say to yourself if you could go back to when you were freshly diagnosed?
I was young when I was diagnosed, so I’m not sure I would listen. But, what I would say would be to listen to your body better. Don’t be so stubborn and learn to ask for help. I don’t regret any of my choices to stay active, but I probably should have slowed down sooner.
What advice would you give to someone else with your condition that has just been diagnosed?
Find a good Rheumatologist. Read their reviews, and find out if anyone you know has gone to see them. I have found there are fewer and fewer good Rheumatologists out there and you don’t want to waste your time and a co-pay on a bad one. Also, find a support system, whether it be online or in person. There is no reason to be alone in your diagnosis.
What life lessons did your diagnosis teach you?
That I could life and thrive with a chronic illness. That although pain will rule my life to no end, there is so much more to life than being active. And that I need to say “no”. Even if I am expected to carry boxes and do yard work, doesn’t mean that I should. When I set limits, that was a changing point in my life.
What lifestyle changes have you had to adapt?
No lifting or overdoing it. Planning my shopping trips. And my diet! Goodbye dairy, sugar, and starch!
Are there any stigmas or misconceptions surrounding your illness?
Biggest misconception is even knowing it exists! Ankylosing Spondylitis doesn’t get the press that is deserves, yet! I’m working on changing that. The other main misconception that severely affects the diagnosis process is that AS is a man’s disease. Because of this, many Rheumatologists will not give a woman an AS diagnosis. However, as time goes on and more Rheumatologists become educated to this fact, the battle of the genders is starting to even out.
Do you have an example of when your illness was invisible to someone else?
Every day of my life. People ask me to walk places, lift things, and do very painful jobs without even considering my health. It puts me in the difficult situation of having to tell them that I simply can not do it. I have no problem sharing about my AS, but I still hate having to use it as an “excuse”.
What keeps you moving forward?
My love of patient leadership and advocacy work. Doing what I’m doing here is what gives my life pride and purpose.
What kind of help have you reached out for?
Requesting accommodations under the Americans with Disabilities Act (ADA) was the biggest form of help I have reached out for. Though that, I received a stool to sit on and a whole lot of understanding about my limits. It has made the work environment a lot more comfortable and safe.
Was there anything you had to give up because of your condition(s)?
Running was the first thing I had do give up. I was a distance runner and I loved it! But, one day when I was 22, I was 5 miles into a 10 mile run, and I just couldn’t do it anymore. Like Forrest Gump, I turned around, walked back, and just like that my running days were over. I also, oddly enough, really enjoyed doing yard work. But, I realized my limits and now I either get someone else to do it, or I just don’t do it at all.
What is the most annoying thing people say to you about your condition?
By far the most annoying thing is not saying anything at all! I am fully open about my AS, I wear a hat from the Spondylitis Association of America every day, and put it under my “Interesting Facts” on my “Getting to Know You” page at work. And still, nobody has ever asked me. As an advocate, I find that very annoying!
Does your physical condition effect your mental health at all and how?
Yup! For starters the “Brain Fog” that a lot of chronic pain conditions cause. I stumble over words, and forget stuff. I’m sure I seem drunk on my worst days. But, outside of that, I get really down on my bad days. Thoughts of “Life is going to be always like this” rumbling though my brain. Its really hard picturing a future when you have a chronic incurable disease.
How do you advocate your condition?
I started out in support groups. I founded my first one in 2007 online and more recently I have have been co-leading the St Louis support group for The Spondylitis Association of America. I love connecting with fellow patients and helping them along their journeys. I also serve on panels and advisory boards for pharmaceutical companies and patient support groups. Helping those who help others find the best ways to serve their patients. I also am just always available to anyone who wants to learn more about AS.
How did your condition change you?
It ended my athletic career (that wasn’t going anywhere anyway) but it did ignite my passion for helping others. I enjoy the life that AS gave me. I feel I have purpose that I could only have with first hand knowledge. Yes, the chronic pain, exhaustion, and all the other symptoms suck, but for what life is, I like where I am as an advocate.
What do you want others to understand about your condition?
Ankylosing Spondylitis is a very scary sounding disease, but with proper treatment, it doesn’t have to be. The diagnosis process is not easy and many are misdiagnosed. If you think you have AS and you don’t think your doctor is listening to you, don’t let them leave until you feel you have been heard.