“Shawn” Feels Guilty About Her Spondylitis
Imagine a spondylitis patient called Shawn. She's an African-American forty-something that most people think younger because she's prone to giggling, can't stop retweeting anything with frolicking otters, and wears lip gloss instead of lipstick. She's one of the first people to come up in web searches. Shawn's a patient advocate, one of the first people you'll see in spondylitis web searches. Her work is recognized by the most prestigious organizations in rheumatology. She consults with elite researchers, telling them what they should be doing about spondyloarpathy. Her mind is brimming with ideas for cutting diagnosis time, preventing complications, and raising awareness.
Shawn has all the current facts. She knows for sure that she didn't cause her illness and she can't make it go away. She's not the type of person to struggle with guilt or anxiety about her illness, is she? On paper, no. It doesn't make sense, but something's bother her.
Spondylitis never leaves her alone
It's everything! Everything about spondylitis bothers her. Everything she needs to do is harder than it would have been. The unpredictable nature of her symptoms interfere with living her life. Shopping takes a long time and leaves her fatigued. Her diet is expensive. Working is complicated because she's never sure how much energy she'll have to handle details or follow through on tasks.
She spends most of her time writing or tweeting about chronic illness and disability. Do healthy people actually want to hear about that? Making plans to go out is iffy. Can't go bowling when even the kiddie ball is too much for her. She likes live music, but what if she can't sit through the concert? Does anybody want to keep coming over to her house to watch documentaries?
Spondylitis guilt is something else
What's there to be guilty about? Spondylitis guilt isn't about having done anything wrong. It comes from failing to meet social expectations to fit in. Low levels of spondylitis awareness and poor understanding of less obvious disabilities means that patients are on a near constant advocacy footing. We're forced to say what we can and can't do, why we miss events, why we might eat strange food, or don't fulfill age appropriate expectations for milestones or achievement.
Nowhere to hide
If we disappear for awhile that feels bad too. What if people think we don't like them or don't care enough to respond to invitations? What if too much time has passed to get back in touch?
How to help
- Affirm that you want patients in your life, with disability, differences, and limitations.Listen to patients express their own needs and experiences without interrupting or driving the discussion.
- If patients express a change of heart or take a different strategy with treatment or self-care receive this with a supportive spirit.
- Make an effort to meet their self-care needs when they visit. My sister is great at this! She has everything I need to be safe and comfortable in her home.
- Take assisting with accommodations as an opportunity to learn rather than acting like you're doing us a favor.
Do you use the word disability to describe your AS?