Coming Out of the Chronic Illness Closet: Coming to Terms with Disability
It's one thing to have a disability. It's another thing entirely to take on the label "Disabled." Disability carries so much stigma. It shouldn't, but it does. Coming out of the disability closet is so, so hard and often involves flipping our lives upside down because it means we have to take our disabilities seriously.
I've been chronically ill and disabled since I was 14 years old, but I didn't fully come out of the disability closet until a few years ago, so let's talk about it. By the way, this is a tough video. (Here's a list of the content warnings: disability, ableism, eugenics, COVID, anti-fat bias, and medical gaslighting.) If you're not up for that right now, it's okay. You can stop the video. Sending you lots of love.
Watch the video at the link below, or read on for the full transcript.
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I went undiagnosed for 15 years before I had names for my multiple disabilities. At times during that 15 year period, I remember thinking, I'm disabled, but quickly shoving the thought away. I was afraid to talk to my doctors about it as they kept telling me my symptoms were "all in my head."
When I talked to my mom about it after college, when I was struggling to find a job, I felt dismissed as if it didn't matter if I was disabled or not because it wouldn't change anything. Once I finally received my POTS and hEDS diagnoses in 2015, I was elated.
Not only did I finally know what was wrong with this haunted meat suit of mine, but I was finally validated in knowing that I was indeed disabled. Or was I? My then doctor who at the time was one of the only doctors knowledgeable about POTS in Oregon, not only invalidated me when I began labeling myself as disabled but actively dissuaded me from applying for disability benefits.
She argued that if I got on disability, I would be become even more disabled because I'd grow even fatter and lazier. Yep, you heard that right? The double whammy of ableism and anti-fat bias, which is technically a form of ableism. Weee...
There's also another layer to this story which has been following the same pattern, but I only started becoming aware of it later in life. I'm autistic. I was born autistic before I ever experienced one of my POTS or EDS symptoms. I was autistic and therefore disabled.
We often talk about invisible disabilities in reference to how they are invisible to others, but we often forget that invisible disabilities start out by being invisible to ourselves because of how our culture gaslights us into thinking our symptoms and struggles aren't that bad or that everybody struggles with that.
Allow me to go on a brief tangent about laziness for a second. Laziness doesn't exist. The behavior we call "lazy" is simply behavior that is the result of disabilities and or unmet needs. Our culture has taught us to believe that laziness is a moral failing, that we are bad, unproductive people if we're being lazy instead of working hard and contributing.
It's a shame-based way of trying to alter undesired behavior. Can the behavior of laziness be a sign of moral failing? Yes, but only in the case of weaponized incompetence where that laziness is being used intentionally against others.
So unless you are intentionally being lazy in order to harm or manipulate others, you are not a bad person. There is nothing wrong with you. In order to come out as disabled to ourselves, we have to overcome a mountain of ableism and stigma.
Our culture tells us that being disabled is a moral failing in order to shame us into being good little productive workers for the capitalist machine. We're taught that most if not all disabilities are "not that bad," and that it's the individual's responsibility to rise above their disabilities and come out stronger on the other side.
AKA, if you're disabled and not the very picture of independence and inspiration porn, then you're a bad person and should stay out of sight, or just die already. Don't believe me? Just look at how those who are immunocompromised and are at high risk for catching COVID are currently being treated.
Our society has made them personally responsible for avoiding catching COVID, leaving most of them trapped in their homes and unable to get their needs met safely, let alone do anything to enjoy their lives or make meaningful connections with other people. That's "stay out of sight" or "just die already" behavior if you ask me.
P.S. I'm one of those immunocompromised individuals, so I'm intimately familiar with this.
Write "COVID conscious" in the comments if you're struggling with feeling abandoned and alone during this time too.
As we consider coming out as disabled to ourselves, and then the next step of coming out to others, there's another factor that can get in the way. If I come out as disabled, does that invalidate others' experience of disability? Will I be taking from someone else if I seek help with my disability?
These questions stem from the ablest idea that because resources are finite within our current systems. For the record, they shouldn't be, but that's a different discussion. They need to be saved for those who truly need them.
There are many gatekeepers and lots of red tape within the system itself that make it very difficult and often impossible to apply for and receive benefits. For example, here in the United States, it took a dear friend of mine five years and the help of a persistent disability lawyer to finally win their case and almost another year on top of that, of waiting before they actually started receiving their benefits and back pay.
I myself tried applying for disability years ago, but was given an automatic no because I lived with a partner who earned decent money. We weren't even married, but the government decided that I was my partner's financial responsibility, therefore, I didn't need disability benefits. And yes, I sought out a disability lawyer, but none would take me because this was a hard and fast rule that could not be fought.
Beyond the gatekeepers within the system itself, it is the general population who have been taught to believe the ablest rhetoric that people take advantage of the system and therefore it's important to police people themselves.
Similar to how a stranger will shame a person in a larger body for their food and activity choices "for their health," the lay person will police people's right to be disabled. For example, there are infinite reasons why someone might need a disability placard for their car so they can park in a disabled parking space, but that doesn't keep people from harassing and abusing people rightfully using disabled parking spaces simply because they don't look disabled.
And heaven forbid someone in a wheelchair stands up or walks. Ambulatory wheelchair users exist, people! You don't have to look disabled in order to be disabled. Ignorant strangers would sure have you think that way. Their ignorance makes it dangerous to be in public if you don't have an obvious disability. Not that it's safe to have a visible disability, but that's a different discussion.
And because of how pervasive this thinking is, it even affects those who in theory should know better, such as health professionals.
So here's the thing, the spectrum of disability is massive and complex, and it is common for people to have multiple disabilities across different areas. For example, I have both physical disabilities, POTS and EDS and Neurodivergence disabilities, autism and PTSD. To limit our idea of who qualifies as disabled to those with obvious visible disabilities is inaccurate and illogical.
Now let's talk about resources. Are disability resources finite? Yes. Are disability resources insufficient for most people? Also yes. Are there immoral people that take advantage of the system? Yes. But that doesn't mean you don't deserve access to resources and have a right to seek them out.
It is not our individual responsibility to suffer in order for others society deems as "more deserving" to have resources. The act of not seeking resources and support does not mean someone else will automatically receive resources and support. The act of seeking resources will not take away from someone else already receiving resources and support.
If you are anywhere on the disability spectrum, you have the right to seek resources and support. Letting our internalized ableism shame us into not seeking resources and support doesn't help anyone. And if you feel called to become a disability activist in order to help more people, that means doing the work to enact systemic change, which is work done in community with others, political work.
We come out as disabled to others in order to be seen, understood, accommodated and supported. But as we have discussed, coming out as disabled doesn't guarantee we're going to experience those things. Coming out as disabled is a vulnerable act and similar to coming out as LGBTQIA+, coming out as disabled is something we end up having to do again and again.
It's not one and done because there are always new people, new circumstances, and unfortunately those who somehow forget and have to be reminded again and again. Sometimes I have the spoons to correct someone and advocate for myself when they're treating me as abled and sometimes I don't, and that's okay. It doesn't make me any less disabled.
This is why we come out to ourselves first and others second, because if we're not grounded in the truth of our disability, we might allow those toxic situations to gaslight us into thinking we're not disabled, which can be very damaging if not traumatic, to come out as disabled in the face of all of this is one of the bravest things a person can do.
Please be kind to yourself as you go on this journey. I believe in you. I'm proud of you. You have a right to and deserve every ounce of support you need to survive and thrive. If you're curious about what I do, I'm a productivity expert for Neurodivergent spoonies, my signature course, The Action. Navigator is packed to the brim with tools and techniques for mastering your time, getting organized, and offering yourself radical compassion.
If that sounds like exactly what you've been looking for, use this link to learn more. Check out this post next on six reasons why disability accommodations are not the same as advantages. And if you like this video, hit that like button and subscribe and be sure to share it with your friends. I'll be back soon with another video. See you then. Bye.
