Questions I have for other patients:
1. Before your experience of acquired disability, did you know that disability is not a neat duality? I was surprised to find it’s not black/white or on/off or able/disabled. (Same goes for continence. Oi.)
2. Did your doctor encourage you try using mobility aids, or did you have to figure it out yourself?
3. Also, assuming you have periodic check-ups with your neurologist, how do you communicate to your doctor about the totality of your experience living with MS? I wrestle with knowing that what they see of me on any given day may not at all represent my day-to-day health or ability.
4. Am I the only one to figure out that the mental components of your coping toolbox are as important, or even more important than, the physical resources you bring to the fight?
5. Do you find the “help us find a cure!” and “let’s all cure it” and “fund a cure!” messages really stilted and distasteful, especially when it’s coming from the major national organizations dedicated to your disease? Research is important, of course.
But what about things we can change or improve now to make life easier for people with a disease that may or may not ever be curable, things like more flexible work schedules, more telecommuting, more accessible housing, medical cannabis, better public transportation, more cohousing options for adults and families, etc etc etc? A cure for MS would only benefit people with MS, whereas systematic social and infrastructure changes could benefit everybody!
6. In magazines and on websites for people with MS, have you also noticed the mismatch between the moderate-to-high level of disability depicted in images and topics related to living with MS versus the happy words used to flog a hopeful, positive prognosis? It makes me suspicious that they know something they’re not telling me.
7. For those of you whose blog is based around your condition, how in the world do you keep it up?! This 30 day streak is wearing on me, and I get the feeling I may never write about MS again once it’s over. (“It” = the 30 day streak, not the MS; see notes on “cure” above.)
What questions do you have for patients with MS, or any other chronic illness? Ask away, and I’ll do my best to share, find, or make up an answer.