When I was diagnosed with ankylosing spondylitis (AS), my whole world collapsed. I feared the worst from the beginning. I had never met anyone with AS besides my dad, whose spine was fused in a hunched position from the disease. AS can run in families and I pulled the short end of the stick from among my siblings.
For the 13 years before my diagnosis, I struggled with unexplained low back pain, difficulty breathing, slow-healing infections, and debilitating fatigue. It was only later that I connected the dots: All the seemingly separate maladies through the years pointed to the same disease.
The fact that it took so long to be diagnosed lines up with an interesting conundrum: People often ask me if AS is rare. In the United States, a disease is considered rare if it affects fewer than 200,000 people, yet spondylitis (including AS and related conditions) affects an estimated 2.7 million Americans. That is more than rheumatoid arthritis, multiple sclerosis, and amyotrophic lateral sclerosis (ALS) combined. However, AS too often feels rare because it is relatively unknown.
I have learned by necessity how to advocate for myself with insurance companies and medical facilities, I know more about my disease than most doctors, and I educate people about AS just by saying its name. You could say I am an insurance-card-carrying professional patient.
I have to be clear, however, that this is not a job I want, even though my life depends on it. I cannot ever quit, and I will never get a raise or a vacation. When I hit a breaking point mentally, my body still needs the care.
I do not know what it is like to be without pain constantly radiating through my spine, hips, and other joints. Some days it is all I can do to not scream from pain. My body is also fighting constant inflammation, causing fatigue to always bubble beneath the surface — the kind of fatigue that turns legs into lead and the brain into fog without warning.
This means that every decision I make involves how it will impact my body. Can you imagine if your body was the key variable to every decision, every moment, every day? My life is a constant navigation of trade-offs. I have dirty dishes in the sink and my home is cluttered. I always need groceries and a shower; but I also need rest, self-care, and joy. It may take all my energy to do the dishes, but it will also take all my energy to visit you, my friends.
Which do I choose? Is it fair for me to see friends when I can barely take care of chores at home? Should I use my limited energy to make sure I have a clean home, or should I use it to find some enjoyment out of life? Which is more important when I can only choose one?
You may be wondering how you can help support me as I juggle these decisions on top of life with incurable pain and fatigue. Here are some ideas:
- You can help me not have to choose between chores and hanging out. You can be as flexible with me as I have had to learn how to be with my body. Perhaps we wash the dishes together and then watch TV.
- One of the best gifts you can give me is to validate my AS story and experiences without question. Talking about it with you means I do not have to try to hide it from you, and it means you do not have to guess what is going on with me. Your effort to understand that I am trying my hardest, while also being exhausted and in pain, is crucial to my mental health and our friendship.
- Please keep inviting me to events even though I may cancel more than I would like. My body is in charge now more than my heart, and I live with frustration about that daily. Being invited to community events tells me I am still welcome anytime my body allows me to join you, without judgement or expectation.
- Understand that the stress and emotional burden of living with chronic disease can impact mental health and cause depression. You can support me by asking how I am physically and mentally, and really take the time to listen. Often, all I need is a safe place to talk and a reminder that I do not have to do this alone.
My full-time job is to manage my health. I live in an unpredictable body; not by choice, but by necessity. The wear-and-tear is considerable, and I need good friends by my side to help when I need a break from managing all the ways AS impacts me.