Facing my AS Fears for the Future
Chronic illnesses must be taken one day at a time. Thinking too far ahead can be distressing, due to the unpredictability of chronic illness and the inevitable suffering. But sometimes, the mind wanders. When faced with a life-altering diagnosis such as ankylosing spondylitis, we not only have to worry about the present-day challenges, but also the “what if?” and “what will happen when…?”
I have normal worries about the future that all 21-year-olds have. What career will I have? Where will I live? Will I be successful? Will I be happy? Adding AS into the mix has made all of those worries seem small. Now, my life is constrained by a disease that acts with volatility and dangles the potential to ruin my life like the sword of Damocles over my head. Although I don’t let these fears get me down, I have to admit they cross my mind every so often. Here are a few of my AS fears for the future:
A major fear of mine, which I’m sure many chronically ill people share, is the progression of my disease. Ankylosing spondylitis is progressive and degenerative, meaning that my symptoms will likely worsen as life goes on. I’m already in a lot of pain at 21 years old, so it is depressing to imagine the pain I’ll be in when I’m older.
With autoimmune diseases, there are high rates of comorbidity. Every time I have a symptom like stomach discomfort or a mild rash, my first thought is that I could be developing a second autoimmune disease or other comorbid disorder. Being diagnosed with AS has increased my risk of developing fibromyalgia, inflammatory bowel disease, and cancer, among others, so I have reason to fear this.
Medication losing its effectiveness
To treat my AS, I take a biologic immunosuppressant drug which alleviates my symptoms and slows disease progression. For many people, these biologics work well for a few months or years, but they eventually develop resistance to the drug and it is no longer effective.
I often worry about the day when my biologic no longer works for me and I will be in as much pain as I was before my diagnosis. It is likely that I’ll have to try many drugs and painkillers throughout my life to fight my symptoms. Medical insurance adds another layer to this fear — my current biologic costs $40K per year, but it is luckily covered by insurance. When my insurance situation changes, I worry that I will no longer be able to afford the drugs that allow me to live a “normal” life.
Finding love and acceptance
Every person with a chronic illness or disability worries about finding acceptance from friends, family members, and significant others. I can’t help but worry that my disease makes some people see me as “damaged” or a burden. Many people have relationship or family problems due to the challenges of their chronic illness, so I truly hope I will find someone who accepts every part of me, including my AS.
Passing my disease on to my children
I plan and hope to have children one day, but there is a chance that they will inherit AS from me. I know there is nothing I can do to change this, but I’ll feel guilty if my children experience pain and suffering thanks to me. I also fear that future partners will see my disease as a reason not to have children with me.
When I write about AS, I generally try to have a positive outlook and point out the silver linings that sometimes mingle with this terrible disease. But the reality is that chronic illness sucks and sometimes there isn’t a sunny way to spin it. Although I know there is no point in overthinking these fears, I wanted to express them, because people without chronic illnesses may not understand how intense and real these illness-related fears can be. With these fears lingering in the back of my mind, I have to remind my future is out of my control and I can only take this disease day by day.
Do you use the word disability to describe your AS?