It’s easy to say that if people can’t understand us, we should just forget ’em. Unfortunately, people like — and to some extent need — their friends and family. So, it hurts when people with ankylosing spondylitis (AS) experience a flare-up and have to cancel plans.
Cancellations are met with a variety of responses: Sometimes people are understanding. These are the people who took the time to learn about your condition or listen to you. These are the people who respect your personal experience.
Other times, people take a cancellation due to fatigue, pain, or immobility as a personal affront. The stigma attached to people with invisible diseases complicates the matter further, as people suspect that we’re pretending or making up our pain.
A good rule of thumb is to believe people who live with chronic illness. There are far more people in actual pain than there are people who are lying about their pain.
I was sick with bronchitis a while ago, for example. It was pretty bad, and I was exhausted, in pain, and unable to breathe. All of that ick was made worse by my AS. I felt like a rusty bag of car parts with a horrible cough. No good.
I had to cancel plans with a friend and ended up in a situation where I was apologizing over and over (even though I should not have had to over-explain myself). With time, however, I realized how unfair it is to make an ill person grovel for forgiveness.
It’s not a good look, and it’s unfair. We’re all doing our best to make a crappy situation better for everyone involved. When someone has an autoimmune or immune-mediated illness, it’s better to give them the benefit of the doubt rather than question their intentions or loyalty.
On the other hand, I think it’s easier to allow illnesses to dictate our plans. Why wouldn’t it be? You’re fatigued one day, only to wake up the next morning and feel like you could dance all night. That said, I don’t think we should expect people to fully understand our situation. After all, how can they? All we can do is pursue accountability by saying yes to plans with the caveat that we may be unable to make it while trying our best to be transparent.
It’s easy to say yes to a dinner, a date, or a weekend plan, only to cancel at the last minute. It certainly happens, but if we are transparent about the possibility of canceling because we don’t feel well, it can help everyone involved. Full admission: I still find this very challenging and it does present issues.
It’s not fun. It’s annoying. But it happens. All we can do is come with our best intentions and our boundaries drawn.
Show up when and how you can and go from there. And please, don’t let anyone make you feel bad about your health. If they do, it’s time to talk candidly to your friends — with an open mind. People aren’t perfect. People want to be loved and heard and understood. Situations like these can be uncomfortable and awkward, but they’ll usually be worth it.
Believe me. I speak from experiences that were good, bad, and ugly.
Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.