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I understand, now

Updated: Jun 11, 2021

I remember this time my mother called me and said “I understand now”. It only happened once. She told me that she was walking in the street and she just couldn’t pick up the pace. Her mind was too full. She said something like: “I can’t even walk at my usual pace with the little worries that I have, no wonder you’re so very slow all the time." But in French.

I’m slow, it’s true. For most things at least. It takes me three times as long to clean my apartment as it does my partner. Dressing up is a torment. Making a decision drives everyone insane, because I first analyse every possible outcome of every possible choice. And then you have to put the clothes on with aching joints and the constant worry that these clothes don’t fit together or that they’re too tight to walk comfortably in. Or to eat the food you’ve ordered while still unsure it’s what your body needs.

It’s always been this way, and I never realised how different it made me until the day my mother said she understood. I cried. Not only for my difference but for the acceptance she had just given me. After all these years, finally, someone wasn’t yelling at me to go faster but telling me it made sense that I didn’t. I wasn’t lazy, I was incapacitated.

I have to walk with a cane sometimes, and even then people grumble about my lack of speed. I don’t walk that slow, but the rest of my movements still aren’t as fast as other people. I tell them they should try being me for a day and see if they can manage half the things I do at half the speed. They brush it off.

I write, I walk, I cook, I patch clothes, I make candles, I draw, I take and edit pictures, I read, I sing, I laugh, I dance, I live. I used to be an assistant, and I was really good at it. I can craft all kinds of stuff. I’m smart. I’m funny. I’m a whole lot of things. A full and complete human being. And because I do all these things and learned to fake it, it took my mother 27 years to call me and say “okay I understand”.

I don’t have an official diagnosis for my disability. Meaning I am diagnosed for a bunch of things but it’s not enough to make me disabled in the eyes of official people who still believe all people with disabilities are wheelchair users. I wonder, if I had that paper, would people stop shaming me for taking more time than they do? Would they let me do all that I do at my own pace? Or would they doubt the paper like they doubt my words when I say “yes, I’m slow, that’s how I am, no I don’t do it on purpose, no more than the last ten times you asked this week”?

Disability comes in so many different shapes. For me the most obvious one is that I’m slow. For my cousin, it’s her wheelchair. For a friend, it’s the constant shaking. Some are more visible than others. And when yours is invisible, often you’re called a liar. Even when it’s visible, people often diminish the impact it can have on your life.

I had a friend who had lost the use of an eye. It wasn’t obvious, and most people didn’t know. I could never remember what eye was the functioning one. She learned to function without it, to act like she had no issue at all. Until she walked into things because of her lack of depth perception, or she positioned herself where she could see the road when we were walking around, I even tended to forget. Yet it was still real, and it still impacted her life.

At times my body just stops moving for a second or two, without me realising it. It’s because my brain is overfull and can’t compute all the information it’s receiving, and as there is no immediate danger, it stops the body to reset itself. It doesn’t take more than a moment, and I’m so used to it that it doesn’t bother me, but I get comments on it all the time. “Are you okay?” Yes, I’m fine. I tell them that my brain has a bug, it makes them laugh and allows the conversation to move on. They get used to it. It allows them to pretend I’m just weird, not disabled. It reassures them. It keeps me safe.

I have a friend with autism who explained to me that he usually looks somewhere above the shoulder of people when engaged in conversation, to be as close to eye contact as possible, because else people thought he wasn’t paying attention. Another friend had to constantly stop himself from going on hours-long rambles about the things he liked most, as he was afraid it would bore people. They both had a tendency to copy my movements, which was hilarious as they weren’t used to my speed. It’s a coping mechanism to be more accepted, as people tend to warm up to those who act like them. It kept them safe.

I had a friend with PTSD so severe it caused her physical health issues. Bad ones. She couldn’t feel anything between her thorax and her knees, including hunger or the need to use the bathroom. She had an impressive amount of food restrictions due to several conditions. She never knew if she was tired or depressed. She had even lost the sense of taste. She had no way of hiding all this but she still tried. She joked about it. It kept her safe.

It keeps us safe to pretend we fit the standards that have been imposed on us. I wear shoes that have at least 5cm of heel or soles to look taller, because my size doesn’t fit the standards and it makes me vulnerable. My mom fixes all her jeans because there are none in her size but rolling the bottoms of the jeans’ legs would show she’s smaller than average. My dad would never stand up straight, he always had a specific stance that made it look like he wanted to appear smaller than he really was. All three of us have learned to talk with a quiet voice, use long and complicated words, forge our sentences to make us seem wise. It keeps us safe.

Official recognition, usually in the forms of diagnosis, keeps us safe. Because then when we can’t hide our disability, we can at least explain it. Being able to tell my partner that I have PTSD induced flashbacks when I take a shower has allowed him to understand and accept that I won’t join him when he takes one. Being able to put a name on the reason I’m slow has allowed me to do research and educate myself so as to make better jokes on it. Not knowing what ails you means you can’t fix it or have the proper tools and help to make your life easier.

Yet getting a diagnosis is a battle, particularly for invisible disabilities or for comorbidities. Most people with visible disabilities will develop mental health issues that often go undiagnosed for way too long, as medical professionals focus on what they can see. And by the time the recognition comes, a lot of damage has been done.

When you are diagnosed for depression, most therapists will focus on depression and not the anxiety it brought, or the ADHD that was hiding underneath. They will miss the deeper reasons for the depression by doing so, and will not be able to provide adequate treatment. Now imagine what it’s like when you don’t even have a depression diagnosis. Or when one doctor gives it and another disagrees.

I was diagnosed with depression at 7. With social anxiety at 22. At 26 I started seeing a therapist specialised in trauma, who told me that both of these are not actual illnesses in me, but the result of untreated PTSD. I have mental illnesses as a side effect of a mental illness, if you prefer. It took 20 years for someone to figure that out. By then I had seen enough therapists to make a complete list of my symptoms on the first session and analyse each one during the second. The third session gave me the diagnosis I was craving, and I could finally start to heal.

It’s been 3 years since that “official” recognition of my illness. I remember that moment with as much clarity as I remember my traumas. It was such a relief. After I came home I started crying. The next day I started writing. It had unlocked something inside me that was pushing to open for so many years, I couldn’t contain it.

It was hard, though. I’m only telling you the surface of it, but the truth is getting a correct label for what ails you takes way too much time, way too much energy, way too much space in your life. Imagine having tooth pains and every dentist you see tells you something different, and all of them insist on being right, and of course they charge, and they each try to fix your teeth but it doesn’t really help and some even cause more damage. After 20 years you finally find a dentist willing to listen to what you think is happening, and takes your opinion seriously, going so far as to orient their research based on it. And they figure it out. You can now try one last time to get your teeth fixed and get rid of the pains. But it took you 20 years and you’re exhausted and somewhat furious to have wasted so much time.

That’s what getting a recognition for an invisible disability, or a rare one, feels like. Sometimes it takes even longer. To be clear, my therapist put the diagnosis 3 years ago but only pronounced the word “disability” a week or so ago during our last session. It never crossed her mind before because I wasn’t in a tough financial spot, and thus didn’t need the piece of paper that has “DISABLED” on it that I’d need in order to get through an administrative hell that may or may not give me 200€ a month. I am now in a tough spot but don’t have the energy to get said piece of paper from the correct part of the French administration. I have no energy for people who would look down on me for not being normal, put me through three cycles of paperwork, and finally give me peanuts out of pity and the need to get me out of their feet. I can’t handle that much stress and anxiety, and nobody else can do it for me.

And yet for some people that piece of paper would be a life changer. People with borderline personality disorder often need therapy and medication to not constantly hurt, and to just be able to live a normal life. But therapy and medication is costly, and in some places not covered by insurance unless there is a piece of paper that has "disabled" written on it. It goes untreated because mental health care is considered a luxury, and so many people live in pain who shouldn't need to.

Disability is a scary, stigmatised word. I have met a lot of people who refused to use it despite fitting the criteria. I have shied from it for a very long time, for the simple reason tht I was functional, if slow, and others were not. As if acknowledging my disability was taking away from others. It’s a word filled with a history fear and discrimination and hatred. It has caused so much pain and struggle and death.

But for us it's just a word that can help understand, accept, and take the right steps to live with our differences.

The relief that I felt when my mom acknowledged the hardships that I face daily is beyond words. The acceptance I have found among other people with disabilities both visible and invisible has often made me cry with joy. Not that I want to be disabled. But I am, whether I want to or not, and accepting it has allowed me to finally start loving myself. I am not lazy, or weird, or a freak. I am me, and I am a strong, brave, intelligent person who happens to need extra steps to complete tasks that others find easy. And you know what? I'm wonderful just as I am.

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