Are You On A Spondylitis Guilt Trip?
Guilt is a serious issue for spondylitis patients and just about anybody else living with a chronic illness or disability. I'm quick to point out that our community faces serious hurdles at every step of the process from awareness, diagnosis, treatment, and overall support.
We don't know what causes our disease, so it can't be prevented. Poor awareness can put us in a near-constant advocacy stance, deciding how much need to expose. Many of the people we'll talk to are hearing about the disease for the first time. They don't understand the serious systemic nature of spondylitis, and that sometimes the treatments don't make as much of a difference as we need in order to make our lives work.
So if we're not talking about who's to blame then what are we talking about? A big chunk of the guilt we feel comes from a mismatch between expectations and ability or clashes with a society that's not suited to meet our needs as well as we need. Patients are under intense pressure to meet expectations in every aspect of life. But work, family, and social life are where things get intense. We're often left with more questions than answers. What are the best career choices for patients? How can they find these dream jobs? How can we manage work, family, and our health?
Pop culture isn't real!
Sometimes it seems that our popular culture describes a parallel universe inhabited by superheros gifted with perfect bodies that are always strong and sexy. These superheroes never overwhelmed, and have perfect relationships, spotless homes, well-behaved children and pets, and lots of money, all without ever needing anything from anybody else. The thing is, even a person of typical health and ability cannot achieve this. It's literally not a thing.
Is it time for a reality check?
I'm only asking to be polite. I'm here to deliver your reality check. Do you have any of the following thoughts?
- “Going to college was such a waste because I’m not doing anything with what I learned. That money should have gone to a healthier student.”
- “I shouldn't be using this handicapped parking space. Somebody much sicker than I am might need it.”
- “It’s a shame that my friends and family have to change their plans to fit my spondylitis.”
- “I am such a waste. I use up too many resources.”
Dealing with guilt
- Always start with a reality check. Is this thought helpful? Is this thought true?
- Have you really done anything wrong? Is so, apologize for your part in it.
- Focus on being instead of doing. This means putting character above tasks you’d like to accomplish.
Do you use the word disability to describe your AS?