Loving My Chronically Painful Body

I've been dealing with a lot of pains in my body recently, something I jokingly refer to as "musical injuries" because the injuries switch places (mostly) but the pain remains. And when I ask my physical therapist what I can do about it, she says unfortunately not much, because these pains are purely a result of my Ehlers Danlos Syndrome (EDS), an inherited soft tissue disorder, and not anything I'm doing wrong.

Examples:

• I sit partially off my seat on the bus so that there is unequal pressure on my bum and my pelvis gets pushed out of place and then my bottom and back spasm so badly it hurts to move until my physical therapist pushes it back into place.
• I slap a mosquito to kill it... And sprain my wrist. I scrub a pot with my other hand and sprain that wrist as well.
• I drive a car and my ankle screams in pain from my pressing the brakes. My knee and hip hurt from that as well.
• My daughter pulls my hand and my hand starts throbbing in pain.
• Right now my ankle is hurting me a lot because I had a physical therapy appointment and she was showing me some exercises to do to hopefully help my ankle and knees not hurt so much, and even though she gave me really mild exercises they are enough to have me aching hours later.

With so many aches from living my everyday life, I've repeated to myself and others so often "I hate my body, I hate my body" and it can be really depressing. My son pointed out the incongruity in my words because I talk about body positivity and loving your body no matter what it looks like or what size it is, and then I say repeatedly that I hate my body.

I had a good long think about what he said and realized he was right but I was at a loss about how to reconcile my belief in body positivity and body love with what has been going on with my body because of my disability and how I suffer because of it. I didn't know what to do, so I reached out to other disabled people and body positivity people and got some good perspectives on the issue that I've been attempting to implement and want to share with you.

The first thing I want to bring up is the concept of body neutrality. Sometimes when being positive about your body is too hard, it's ok to just be matter-of-fact about your body. I have a body and it is neither good nor bad, it just is a body, and that is ok. If you can't get into the body love stage at least moving from the body hate camp to the body neutrality camp is beneficial in getting the hate out of your life. Just looking at your body non judgementally. It is simply a body, just like any other body, plain and simple.

This goes hand in hand with the concept of radical acceptance. I've learned this in therapy for years already and I bristled at it so strongly at first, because sometimes things just freaking suck and why should I accept that? We want to fight injustice and when things suck we want to fight them too. But sometimes we can't change things and we can fight all we want but all we do is get angry and expend emotional energy on it and still nothing changes. And a big relief comes sometimes in just learning to accept things, sucky and all. "It is what it is" and all that. (I absolutely hated when I heard contestants in reality shows like Survivor and Big Brother use that phrasing when they lost, but that probably had more to do with my bristling at the concept of radical acceptance than anything else.) And it is called radical acceptance because sometimes to just accept is radical but that doesn't make it any less important. And when I say just accept things that doesn't mean don't go out to protest and try to make a change when you see injustice. Radical acceptance is more something that is simply irreversible, like accepting the death of a loved one or the reality of accepting that something sucky happened.

So while I have heard of and tried to implement radical acceptance in my life, until someone brought up the concept of radical acceptance regarding my body I hadn't even considered it. The way radical acceptance could work with a body like mine isn't just to say "Ok, I'll suffer, there's nothing to do" when there are things I can do, like going to physical therapy and doing exercises to strengthen my muscles. But radical acceptance would be to simply state facts and accept them like:

• "I have Ehlers Danlos Syndrome and it is a lifelong genetic thing."
• "My joints don't provide my body with lots of stability."
• "I get injured easily and take a while to heal."

And I guess somewhere along those lines would be to accept that I get in pain and will get in pain because of subluxations and sprains and there isn't really anything I can do to stop it, but it is also not my fault or that I'm doing anything wrong. But it's still much harder for me to radically accept that, while I basically have accepted the first three.

When I drove to the physical therapist and I was in excruciating pain pressing the brakes and I asked her if I had a subluxation or a sprain on my ankle and that what was causing the pain and she said no, the cause of the pain was simply EDS I wanted to scream because that wasn't fair. (I know that was a run on sentence and I don't care.) I honestly wanted to kick and scream and shout because I drove because taking a bus hurts my body and I was told I needed a car, and then driving hurt me, and I wanted to scream at the universe "What the heck am I supposed to do if the thing that was supposed to be the solution to my pain was another way to hurt myself!!" But kicking would just hurt my feet and screaming and shouting won't change anything.... And somehow I'm supposed to just accept this even though every ounce of me wants to have a temper tantrum...

(Today my physical therapist did give me a few light exercises that might help with the pain I get driving.... And that's why I'm in more pain now.... But maybe it'll help?)

Lastly, something else people suggested is that I can think about my body and myself on the same team. My body isn't out to get me and doesn't want to suffer any more than I do, and we are a team together dealing with these health issues that come up. My body is an innocent bystander in this just as much as I am and we need to work together to handle this situation. And just as if I saw someone else suffering I can have love and compassion for them, I can love my body and show it care and compassion for what we both are going through together.

I'm trying to figure out how to reframe my thoughts and words when I want to shout out "I hate my body". I'm thinking maybe saying things like "I'm in pain and I'm mad that this keeps happening and I'm resentful of it" without blaming my body or screaming that I hate it, because my body isn't trying to hurt me and is doing it's best to help me function on a day to day basis. I'm not sure it'll work, but I really am trying to get the phrase "I hate my body" out of my lexicon and find another way to express my frustration with my situation.