Noor Pervez

Coping with Body Dysmorphia

Posted on August 5, 2020June 14, 2023 by Noor Pervez

Finding information that are about body dysmorphia that’s by and for people who experience it can be incredibly challenging. The material is there, but you have to know where to look-it’s buried, mired in a lot of academic language.

Let’s break it down. Body dysmorphia is a medical condition that deals with hating your body or a specific aspect of it. In my case, it manifests as chronic dissociation from my body. That means I sometimes don’t recognize myself, and that I perceive my body as belonging to someone else entirely. That gets complicated to deal with, particularly in the social media age. So, how do I cope?

I create defining characteristics every morning.

Every morning, when I look in the mirror, I see a blank slate. It confuses me to see my own hand moving back and forth if I wave to myself in the mirror. This state feels complicated for me. It feels gender affirming to have trouble figuring out exactly what I am, but it’s also alarming to not really know what I physically am.

I deal with this by picking out clothes and makeup that are really bright and eye-catching. Take, for example, a red liquid lipstick. When I apply it to my mouth, and catch myself in the mirror or my phone screen throughout the day, I can recall this morning, when I put it on-for that day, I consider myself red.

I do my best to flash things up, with bright colors and patterns that I can remember. These are a visual cue. It’s a way to establish common ground with people as well. It’s a conversation starter that doubles as a way for me to remember and affirm that yes: the person in the colorful clothes is me.

I pick recurring visual themes in mobility equipment—and document them.

All of my mobility aids are brightly colored, and feature at least one of the three primary colors—red, yellow, or blue. When I’m taking an aid in the morning, I can always recognize them as something I often grab because my mind associates those colors with being in less pain.

This theme also runs into my outfits being bright. Primaries tend to go well with brightly colored outfits, and contribute to the visual aesthetic I’ve developed to see myself. I also practice regularly photographing myself with aids, which helps solidify in my mind that the bright person, the person that wears the colorful outfits, is me.

I take time to ground myself in my body.

I have a dedicated ten minutes at the beginning of the day where I stretch and apply cold compresses to my body. That doubles as pain reduction, but its primary function is to try to make my mind connect to my nerves enough to recognize that my body belongs to me. I take a similar break midway through my workday to stretch and walk outside, and a hot bath or shower at the end of the night after I’ve wiped away the visual cues I placed that morning.

Grounding techniques can be harder on me, mentally, because it’s a more directly physical way to try to force my body and mind to work together. If you choose to go this route, I recommend being gentle with yourself, and starting with shorter periods of time.

Working alongside my dysmorphia has been a challenge, but over time I’ve learned that I am not broken or evil for struggling to connect to my own body. In a world that’s determined to make my body all that I am, my mind is fighting for something different.

Mental Health

About

Noor Pervez

Noor Pervez is a community organizer who works at the intersection of race, religion, LGBT+ issues and disability. He has been in recovery for several years, and can be reached on Twitter @SnoringDoggo.

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You Are Not A Burden: On Disability, Dating, and Support Needs

Posted on November 19, 2019June 14, 2023 by Noor Pervez

Dating with a disability can be hard. As an autistic person with a physical disability, chronic pain, and a few mental health disabilities, I face a lot of drama when it comes to dating. Disability is baked into every phase of the process, from seeing me for the first time (seeing my scooter, my limp, my glasses) to the first date (Is it metro accessible? Overstimulating?) to sleeping over the first time (CPAP, night guard, the lights have to stay on).

Not everyone is automatically up for that, especially if you, like me, have ended up dating people whose disabilities don’t match up with yours. (Most of my partners have also been autistic, and dealing with mental health disabilities, but none have shared my physical disability at the time we’ve dated.) While I can only speak from my own experience, I’ve picked up a few lessons that I follow based on past experience.

I have a right to control how I handle my disability – without my partner.

When my able-bodied partners recognize that my disability involved something they considered to be a sign it was super serious (i.e., a CPAP, more than 5 medications, mobility aids), they often make the mistake of assuming that they need to integrate themselves as my caretaker. They’ll make assumptions about what I can and can’t do, and push me accordingly. (“You should walk more! Come on, let’s go up the street to the coffee shop, you’ll feel great afterwards.”) In reality, that isn’t their choice to make. I know my body, and I am in charge of it, and how much I push it and for what purpose on any given day. I don’t need a partner to become my personal care attendant (PCA) by default.

I’ve made it a point to start directly telling my partners, “My physical limits and my medical decisions are not something I’m willing to debate” or “That isn’t your decision.” If the behavior persists, I’ve made the choice that I will leave them. Respecting my independence and my right to bodily autonomy is not optional.

Sometimes, disability requires planning. That’s not the same thing as me being inconvenient.

As someone in my early twenties, many of my partners have been incredibly spontaneous. That can be fun! Sometimes, my partners were interested in parties, dancing, or going to museums on a whim. They were used to being able to call on their partners and, with little more than a few words (“Let’s go white river rafting!”) being able to go. Then, they dated me.

For my body, some activities require planning.

For example, if I wanted to go rock climbing, I would have to:

Find an adaptive rock climbing location
Take MetroAccess or the Metro there on my scooter
- Which means checking that the elevators are working
Plan on having at least a day afterwards to decompress from the physical activity.

That’s all totally fine by me! I know my body and how to plan for it, but I expect my partner to extend me the courtesy of asking, “Hey, what would this involve for you? Would it be helpful for me to look up any of this information beforehand?” For some of us, this is a process that might take a day or two, for some of us a few hours.

Regardless of how long it takes, that doesn’t make us a burden. It just means we have a different set of physical considerations. It’s an access need, just like my noise cancellers or my scooter. It’s okay for my partner to need a little time to get used to these things, but I refuse to let anyone treat me as a burden because I need to prepare. It’s just a part of my life.

My Disability Isn’t About Them

I’ve had the misfortune of many of my partners making my experiences as a disabled person into their problem. For example, during a conference, one of my first partners offered to push my manual wheelchair. She had a hard time physically pushing me and navigating the city curbs. I gave her an out several times (we were in a big group, so I asked if she was sure she didn’t want someone to take over), but she insisted on continuing because it was a way to prove that she cared for me and that my disability wasn’t an obstacle. I thought it was romantic at first, until I saw her in person again when I had my motorized scooter and she cheered how great it was that she “wouldn’t have to push me anymore.”

This isn’t an isolated incident. I can recall a rushed outing to the pride parade, planned at the last second by my then-boyfriend. When I asked him where we were planning on parking and how he planned on getting us to seating, he said, “I don’t know,” and became gradually more upset when I asked if he’d thought about how I was going to get my body from wherever he parked to the main parade area, or if anyone would be able to help push me if I got exhausted. Finally, he burst out, “You’re complaining on purpose to make me feel guilty!”

In both cases, the problem here is the same: my partners took my disability personally, and saw it as an obstacle to overcome rather than an inherent part of me. This made me feel awful, because it felt like a part of my identity was a problem to them. I felt guilt, but also anger. As someone who takes pride in my disability, I want my partner to as well. I’ve since decided that I want a partner who doesn’t ignore my disability, but accepts that they’ve got to work with it–because it is me, and it always will be.

Sometimes, I can just have fun-and that’s allowed!

It may come as a surprise to some, but I don’t always end up dating the people that I have dates with. Sometimes, I have one-off dates, or a handful, or only see someone casually. Not everyone becomes a long-term partner, and I’m okay with that!

One of the coolest things I’ve learned as someone who’s still figuring myself out is that I’m allowed to just do things for fun with cool people. Friend from a genderqueer group that there are some sparks with? Let’s go to the park, and spin around in a ModCloth shop! Maybe it’ll lead somewhere, maybe it won’t, but right now it’s enjoyable. Want to give someone a kiss on the cheek just to make them giggle? Ask for consent, and if you have an enthusiastic yes, go for it! Aching to go out into the countryside and spend a day among some flowers? Get together a group of friends, romantic and otherwise, and plan to rent a van with a ramp for a day! The possibilities are endless.

One of the hardest things, I think, as someone with a bunch of disabilities, is that it can feel like our happiness and ability to do things is tied to others. And sometimes, maybe it is. Interdependence is scary, sometimes, but it can also be beautiful-and it’s lead to some of my greatest adventures. Between friends and lovers, there’s a lot I can do that I never imagined possible-and it’s only the beginning.

Relationships and Sex

About

Noor Pervez

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Disabled People Deserve Better Access to Care for Eating Disorder Recovery

Posted on May 29, 2019June 14, 2023 by Noor Pervez

The first time in what was already a decade-long experience of anorexia that someone was willing to admit I had other disabilities, I was twenty years old. I was told I would be best served in an institution due to “complex medical needs” making anorexia harder to treat. As I studied the face of the counselor telling me this, I realized fairly quickly that this place – a center for students in recovery on my suburban campus in North Texas – was going to be like so many others I’d encountered. I’d been told the same thing about requiring institutional care prior to my chronic illness diagnosis.

The reality was that, like many counselors before him, this counselor lacked the broader resources for which funding is supposedly poured into institutions: Nutritionists. Software we could both use to monitor my food. Medical staff who had literally any long term training regarding how anorexia impacted the body, let alone a disabled one.

My experience with anorexia is a complex and lifelong one, beginning at age ten. Many of my hormonal disabilities (thyroid, anemia, deficiencies, complete lack of a metabolism) are the result of nearly ten years of convincing my body that I didn’t need food to function – and my body believing it. My restriction made my fibromyalgia pain worse, and my bouts with compulsive exercise contributed to already deteriorating nerve pain in both my legs. I didn’t know how to put all of that information together, and neither did the eating disorder professional that I saw. He specifically said that he didn’t think I could handle this without the help of a full team, and that that team would be in an inpatient program. What little treatment I was able to wring out of my time with him proved to be further isolating, and I often felt that I was being pitied rather than treated. It was incredibly apparent that he believed that I was making the wrong choice.

When the counselor said that I would be best served in an institution, what he was really saying is that he wasn’t able to help, and that I needed someone he deemed more competent to work with me. Too often, this is the only option we are offered.

Recovery from eating disorders was designed with the idea that people could enter a place closed off from the world for a few weeks or months and come out significantly better. This is not realistic for many of us, particularly those of us with disabilities. Being forced to choose between an institution and continued struggle, many of us will struggle for a lifetime – and understandably so. Institutions have tortured, starved, murdered our people for most of known history. To be told we must go into one or be denied care is unforgivable.

Whether in or out of institutions, many of us are told during the course of treatment that because of our disabilities, we are the first or only of our kind. We’re the exception to the rule. The strange, the unknown. The stability that we are asked to entertain in recovery (eating within a set standard, and specific amounts) is offset by the complete chaos stemming from the reality that those supposedly helping often have no idea what they’re doing with us.

Disabled people deserve better. Treatment teams can exist and work outside of institutions. I am living proof. I’ve coordinated care with a nutritionist, a team of doctors (who I have had to educate myself, with the help of my nutritionist and endocrinologist) and a counselor. It hasn’t always been easy, and it took time to find people who were competent. In the future, I see a world where we can find competent eating disorder professionals outside of institutions easily. That world will only come when we make it.

Health, Mental Health

About

Noor Pervez

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