So this winter break I’ve been looking to learn to play the spoons. I don’t mean in a literal, on your Southern front porch type play the spoons but more in the finding joy in dealing with chronic pain. There’s a theory that when you have chronic pain or illness you start your day with a certain number of “spoons” and you have to budget them for what you are planning to do and sometimes you find you just don’t have enough even with careful planning. I’ve really been wrestling with my attitude about it all, to be honest and I’m trying to find some joy.

I’ve had chronic pain for a long time. I didn’t know what it was about. I had a laundry list of things that were wrong with me and I felt like people looked at me like I was a hypochondriac. Last week I was diagnosed with joint hypermobility syndrome which sounds like “no big deal, so you’re bendy, whatever” but it turns out it can cause a ton of problems. Lots of people have it and have no problems and then some people like me find that they have major issues. I had been advocating for a long time trying to get answers and I figured when I found an answer that they would just fix whatever is wrong with me, but it turns out they can’t, really. Like Lady Gaga says, Baby I Was Born This Way. I have to make adjustments to my life to make me more comfortable, but there’s no way to make my body make collagen that isn’t defective. It is what it is. On the one hand, I have answers, which is great. Instead of being blinded by the lights of all the individual things wrong with my body, I can take a step back and see the constellation it forms. On the other hand, it still sucks. But I’m not crazy. There is something going on.

So where do I go from here? I have to figure out how to design my life to fit my needs. I have to find recreation I enjoy. I have to work fewer hours and take more breaks. I have to have a long term plan for if my hands aren’t working well (dictation software? having a more consultative role?) I have to change how I eat (my symptoms decreased when I was eating differently.) I have to do some more blood work. I have to get orthotics. I have the information I need to accommodate myself, I just have to implement it, experiment, and find a balance that works.

The past week I’ve been vacillating between anger (WTF body, why have you forsaken me?), disappointment (family planning decisions due to future pregnancy related challenges and the hereditary nature of the condition), depression (Is this as good as it gets?), fear (is my boyfriend going to leave me because I’m broken? Will people tire of me whining?),  frustration (It’s not fair!) and self-pity (go on without me!) I have been on a roller coaster and I feel like I’m going to throw up but that’s just another symptom. It’s like the end of The Sixth Sense when he realizes the plot twist. I’m in an M. Night Shyamalan movie or something. It all makes sense which is liberating but at the same time frustrating because HOW COME NOBODY TOLD ME BEFORE?

I would like to figure out how to do some advocacy for people like me. It’s really isolating to feel broken when you feel like everyone just assumed you were a whiner. I wish there was better screening for hypermobility in prenatal care because it can cause challenges there (which explains my child’s Evil Kneivell entry into the world at lightning speed.) I wish eating disorder patients were better evaluated for hypermobility because the thing that makes us clumsy from EDS/JHS is something that contributes to being unable to form a healthy/accurate body image/schema as we can’t really figure out where our bodies are in space. There were so many points where this could have been detected and wasn’t. I was diagnosed separately with all sorts of things that together make up this condition and if more people understood maybe I wouldn’t have felt like a freak for so long. I know my doctors did the absolute best with what they had, I just wish they had more available to them in terms of tools and processes to catch stuff like this and that they understood being pale and bendy can actually be a problem.

The good news is, in leaving my job, even though I didn’t understand why I needed to, it was definitely what I needed to be able to manage this. I’m not saying people with this issue can’t hold traditional employment, but that my employment situation and my symptoms without a definitive diagnosis were not conducive to me being well. The open office concept was a lot of stimulus and my body makes too much adrenaline sometimes and it was leading to rolling panic attacks. Working in criminal justice is already an adrenaline heavy field and I needed to give my nerves a break. Working from home I can work from bed, the sofa, my desk, whatever feels best for my body in whatever clothing I can manage. I can take as many breaks as I need to as long as I meet my deadlines and I can be as comfy as possible without having to worry about the leggings police. I can be flexible about start and end times based on what my body needs and still have happy clients.

That’s the interesting thing about realizing you have something wrong with you later in life. In filling out the forms, there were a lot of things that I could check out “have no difficulty with” because I’ve been accommodating myself my whole life without knowing why I needed to. I’ve been figuring out how to get through life with some things being hard. So my boyfriend does the chores and I don’t wear things with buttons and don’t really eat soup or do really fine motor things. On the surface, looking at those forms, it probably looked like I was doing just fine but when we talked about what those questions meant, my rheumatologist had a better sense of limitations.

It’s a lot to take in and this attitude adjustment (like this essay) is taking a long time to swing around. For now, I’m just trying to get off the rollercoaster of feelings and learn to play the spoons I’ve been dealt, and find some joy in chronic pain, whatever that’s going to end up looking like. Thanks for being along for the ride!

1 Comment

  1. Bianca Smith

    Sending hugs. It’s frustrating but easier once you have a diagnosis. My friends are very accommodating. If I’m Too sleepy or sore I can cancel plans. And instead of spoons I using the gaming analogy and health points. Spoons seem too big and distinct. One hundred points matches me more than only six spoons.