This is me, look at my scars

The struggle to accept a permanent disability is real.

I’ve been working on that mindset for a while now – I guess since it was officially suggested to me that I needed to put in a disability claim because of my diagnosis and restrictions. I’ve talked a bit here already about how I’ve struggled with this realization, that my body has changed and so have my abilities; I’m actually in therapy now to process my grief and anger over what has changed and what I’ve lost. It’s been going well but sometimes the subconscious will tap my metaphorical shoulder and say, “Hey, you’re not over this yet.”

This morning, it was in the form of a dream.

First, let me say that I’ve never dreamed about myself with Crohn’s Disease before today. Not once, not even nightmares about the hospital stays, which is amazing because I definitely have trauma from them! I’m always a healthy version of myself, usually younger, and my dreams are often more esoteric or weird and not this direct.

The first part of the dream was very much that – I was with a group touring some large house/complex of historic buildings of undetermined nature, and we were winding through labyrinthine corridors and rooms like one does in these types of tours. No big deal, it wasn’t a remarkable dream in any way, though it was as vivid as my dreams usually are. I’m a very visual, story-oriented dreamer.

We passed through a room that was an office type space with a big desk and walls of bookshelves. I was the last to go through, and we had to navigate between the shelves and a woman in a chair who didn’t want to move in to give more room for passage. Everyone else managed to squeeze by, but I could not.

When I politely asked her to let me through, that I couldn’t get past her, she said, “Absolutely not.” Evidently she wasn’t going to move because I was “too fat” to get through the space and she wasn’t going to cater to that.

Now this was already problematic, obviously, because who the hell does that? Well, my subconscious, that’s who, because I’ve been struggling with my self-image thanks to post-surgery changes to my body and some weight gain from my body’s desperate attempts to keep me nourished. But it’s also reflective of the incessant hatred and cruelty that I and many other fat bodies have experienced both in person and in online spaces.

My reaction was anger [which is good, because there are times it’s shame] and I told her that was unacceptable because a. it’s not like I can drop weight immediately, b. she was being hateful, and c. it was about something I had no control over. She fired back “Of course you can control it,” and I proceeded to shout out, “It’s because I have Crohn’s!” When she scoffed and said “No you don’t” I pulled up my shirt and showed her my belly scars, angry tears streaming down my face, and her expression changed from disdain to dismay. She wordlessly let me pass and I stormed off, quivering with emotions.

My alarm went off just then, and I woke up with all those emotions still raging inside.

The Uno Reverse Card

This was a dream but I’ve had to declare my Crohn’s diagnosis like this before – just not as dramatically. From being questioned about masking to wanting to use self-checkout to gaining weight to yes, applying for disability, it’s the uno reverse card that turns the conversation back on the accusatory person with a slap of shame, but it comes at a cost to me, too. I don’t want to pull that card, and I shouldn’t have to.

And the fact that this is showing up in my dreams means that it’s bothering me on a deep level.

Thing is, it’s a situation that folks with disabilities talk about a lot – the never ending pressure to prove you’re disabled, or disabled enough by some undetermined metric to deserve whatever it is that you need. In my dream case, it was just to move freely without hassle, and that’s a really common complaint. Like using myself as an example: what if I end up needing a handicapped parking placard? Do you know what kind of hassle people with invisible disabilities get when some abled people get it in their head that you’re not disabled enough for those spaces? It’s a whole thing, and it often gets ugly.

Going through the disability process has already opened me up to scrutiny. I’m constantly asked to answer endless and repetitive forms designed to catch me out in a discrepancy. Any way to discourage or disqualify applicants! Then there’s things like mental tests, explaining symptoms and how they affect you in excruciating detail, and waiting months and months between contact from Social Security, just to be told the same things you were told the last four calls and/or be asked for the same blessed forms you’ve already filled out. Twice. Invisible illnesses get a lot of skepticism. But actually, so do visible ones! That’s a story for a future post, but even being in a wheelchair doesn’t get you out of endless questioning and doubt. It’s not my story but I’ve heard it often enough from other disabled folks.

That’s the metaphor in my dream: having to bare myself down to my surgical scar in order to prove that I deserve accommodation.

I never show off my scar. I’m not embarrassed of it – it’s a symbol of survival for me – but coming to love it is a work in progress and it’s changed my body shape, as I mentioned previously. Having that happen suddenly, irrevocably, and in a way that completely changed me is a lot to process and adapt to. My scar bisects my lower abdomen, changing my softly rounded belly with a crevasse that will never be filled in. My belly sits differently now, and there’s no minimizing it. I can’t wear waistbands that restrict at all – drawstrings or soft elastics only for me. Nothing tight or formfitting, even if I wanted to, which I don’t. They hurt and they don’t look good, and they trigger urgency in me as an added bonus. Yay?

Because of this, it’s become a symbol of everything that’s happened to me. I love it, because it’s part of me and those surgeries saved my life. I hate it because it altered my body in ways that I’m struggling to love, and I don’t recognize myself because of that. It’s the representation of all the things I can’t yet do or I’ve lost because of this illness.

To bare myself like that, even in a dream, is symbolic, but I also take it as an act of bravery that I aspire to live up to in my waking life. By writing here, by talking freely about what I’ve gone through and continue to live – that’s me baring that scar for everyone to see.

Look at me. This is who I am now. How dare you judge me? I am doing the best I can with what I’m given. Look closely and consider how you treat me, and people like me: you could be here one day.

I’m taking the lead from the dreamtime version of me. Here I am: this is me, look at my scars.