Learning to Identify With a Disability That Isn't Evident

mother hugging daughter with down syndrome

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Key Takeaways

  • Those with invisible disabilities tend to have a roundabout route to diagnosis.
  • Identity, especially when it comes to disability, is as much an external process as it is an internal one.

To say you’re disabled publicly can be a terrifying experience. July is Disability Pride Month, and many of those with the label—whether they see it as a positive or a negative— are exploring what it means to identify as disabled.

For some, the identity is prescribed purely by others. Identifying with disabilities that aren’t as visible can mean a lot of self-reflection. What is clear, whether you’re a patient or a practitioner, is that how you identify can affect your mental health.

I Know You Are But What Am I?

For many disabled people, diagnosis is just a small part of the story. For Shelley Nearing, who was told she had severe anxiety and depression once she got to university, it wasn’t until she went to a private practitioner many years later that she was able to be diagnosed as autistic.

Nearing says that despite two degrees in disability studies, it was finding community with 2SLGBTQIA+ people that helped her understand herself as disabled.

“I did a lot of frontline work and I was with professors of the disability community, and nobody pointed out that I was autistic. It wasn't until I started to look around people in the queer community,” she says.

Nearing says that while she knew she met all the criteria, like many autistics, she self-diagnosed first before seeking formal validation. Medical professionals were hesitant and actively resisted providing her diagnostic support.

This was after she had spent more than a month on a psychiatric ward with what Nearing now identifies as a textbook case of autistic burnout. In one case, she says a practitioner was actively resistant.

Shelley Nearing

I can say I'm autistic, but then I leave that up for someone else's interpretation. I don't really say how it impacts me...I'm open, but I'm guarded.

— Shelley Nearing

“She didn't diagnose me as autistic, even though they were asked to, she did a borderline test though. If I was borderline that'd be fine, but that's not what was asked.”

Nearing says that, as a result of her experiences, how much she’s willing to share about her disability depends on who is in her space. For her, it feels as if society is less accepting of disabled people when they don’t fit the stereotype of what disability can look, feel, and sound like. 

“I can say I'm autistic, but then I leave that up for someone else's interpretation. I don't really say how it impacts me. I'll say I'm dyslexic, I have anxiety, but then I leave it up for interpretation. Like, I'm open, but I'm guarded.”

Invisible in the Office

Coming to grips with identifying as disabled can be just as tough for those who work in mental health.

Turiya Powell, LCMHC, says that her experience of identifying with a disability began with a lot of questions after being diagnosed with multiple sclerosis (MS) in 2005.

“At the beginning it was just like, ‘Oh my gosh, what is this thing?’ And then, you know, just diving kind of into the research of, well, how does this affect my body? What is the prognosis? What do I need to do to help myself to remain as functional as possible?”

Turiya Powell, LCMHC

I call it invisible because people don't understand it...You may get a look like, ‘She doesn't look like anything is wrong with her.’

— Turiya Powell, LCMHC

Powell says that since becoming a counselor—she’s been practicing since 2015—she finds herself using her own training for support. For her, that means using grounding techniques and self-talk to combat the feelings of depression that often accompany her high symptom days.

“I’m reversing my practice on to myself to say, ‘Okay, well, I know that this is what I teach my clients.’”

Powell says her MS is still invisible to many and that it can be difficult when she receives glares in public spaces when she uses her disabled parking placard. 

“I call it invisible because people don't understand it…You may get a look like, ‘She doesn't look like anything is wrong with her.’ And it's like, you don't understand that by the time I'm done walking around the store, I'm not going to be able to walk very well back to my car.”

What They Wish They'd Heard

Both Powell and Nearing have advice for themselves and others. For Powell, it’s a message for her younger self to find mental health support and to not ignore medication.

“I would tell myself to really take therapy seriously. At that time, when I was in college, I was young, I was just like, ‘I don't need therapy. I'm okay.’ And then, you know, actually take the treatment that is prescribed to you. Because I did a lot of skipping. I was terrified of needles at that point.” 

She feels that counseling education tends to be more focused on learning all of the conditions that staff may come across in their work and that the intersections between disabilities—and their visibility—can get lost. 

“I think we're on like, a low to mid level of understanding, but really, it's not discussed in school, not to the extent that I think would be beneficial…it's more just kind of placed as, 'Oh, this person has anxiety due to another medical condition.' And that's kind of where we leave it.”

Nearing says she wishes mental health practitioners, as well as wider society, understood that a person’s actions—particularly a disabled person’s actions—often have a deeper meaning.

“I really wish that they would see behavior as a form of communication rather than just a behavior.”

What This Means For You

When interrogating your own relationship with disability, it's important to remember that what's on the surface may not be the only concern at play. When it comes to mental health care, that means being willing to look at the intersection between disabilities, like MS and depression, to get a fuller picture and give/receive better care.

By John Loeppky
John Loeppky is a freelance journalist based in Regina, Saskatchewan, Canada, who has written about disability and health for outlets of all kinds.