Archive for relationships

Last thoughts on a school year

As I am finishing up my second year of college and preparing to transfer, I am left with a lot of mixed feelings. This last year and a half has been the most difficult for me health-wise as I’ve observed the deteriorating of muscles and tendons, of my mental clarity, and of my general sense of wellbeing. People ask me frequently what it’s like to be in pain all the time, and honestly it still baffles me. It baffles me that though I have gotten used to feeling this way, physically, I’m still not used to all the repercussions.

I have virtually lost my ability to do some of the things I was once able to do, such as climbing stairs by myself. In the event that I have to climb up or down more than two or three, I have to have someone to lean on, to balance most of my weight on, because the muscles in my legs get tight and spasm. As many who are disabled probably know by now, having to rely on others puts a person in a very vulnerable position. For me, a former significant other would hold this over my head, would shame me, would complain about how much of a burden my disability was on her.

This idea of the burdensome disabled person is not unique to relationships I’ve had, however. It’s something I have, if you’ve read my posted e-mail from disability services, felt from my school as well. It seems to be a common trend among students to be othered by their schools’ disability services offices, to be treated as if the students’ needs for accommodations are unreasonable or unwarranted or untrue or giving some sort of unfair advantage to the disabled student. Indeed my school’s inability to accommodate me, or to listen to my grievances when I’m not being accommodated, is one of the main reasons why I’m leaving–well, and then there’s the blatant classism, but that’s a story for a different post perhaps.

Any school, however, that that has demonstrated to me that it is going to allow their administrative officials say things that are insensitive and disrespectful to ability, class, race, sexual orientation, gender identity, belief, country of origin, or any other way a person identifies or is marked without repercussions is surely not getting my money next year. I’ll take my butt somewhere else, thanks!

Spoon Theory

“Spoon Theory” is something that has really changed the way I’m able to explain my illness to people. I found Spoon Theory on But You Don’t Look Sick, a blog about invisible disabilities, and I haven’t found a better way to explain how it feels to be in chronic pain.

The author, Christine Miserandino, says that healthy people expect to have an endless supply of spoons, but people who are sick start each day with a finite number of spoons, which represent a person’s energy to make it through the day, essentially. The friend Christine is explaining this to has lost half of her spoons just getting ready for work. I think this essay is a great tool for explaining to loved ones your condition.

Spoon Theory has even become a bit of an inside joke among some chronically ill people in the But You Don’t Look Sick community, where people wish each other “extra spoons”.

The National Fibromyalgia Association has a variation on Spoon Theory that is specific to chronic pain called the Clothespin Challenge, in which someone who does not live with chronic pain holds a clothespin on their finger and then explain to them that with chronic pain, you can’t just take the clothespin off when you feel like it.

These are both great resources for helping understand chronic pain, kudos to But You Don’t Look Sick and NFA for these great resources.