Tag Archives: chronic illness

Mental Hell-th: Bringing Back My Mental Illness Advocacy

Summary: Carly talks about mental illness and why she still doesn’t really want to talk about it. Advocacy is hard!

Most people don’t know this, but my disability advocacy work didn’t start with physical disabilities – it started with sharing my experiences with depression and generalized anxiety disorder (GAD) at age 14. 

If you won’t ask it, I will: “what happened?”  

And the honest answer that I’m grappling with as I type is: “I don’t know.” 

Or, more reasonably, I don’t know why or how I chose to return to disability advocacy, and alienate the disabilities that got me here in the first place. 

As the relationship between mental illness and physical disabilities hits the disability-mainstream in what feels like all the wrong ways, I felt an obligation to re-incorporate my mental illness advocacy into my work. But a lot has changed since 14, and I have had to do a lot of personal work to understand why I abandoned mental health advocacy in the first place, how I can best advocate for the multiple types of disability I experience, and how I can discuss some very personal and difficult topics under what can sometimes feels like a microscope. 

With my physical disabilities of psoriatic arthritis and fibromyalgia, I know what I’m doing. I understand how the diseases work, what triggers them, and how to cope. They are predictable (most of the time) and manageable (or at least, I know what resources work for me.)

With my mental illnesses, first GAD and depression at age 12 and now GAD and PTSD, I have absolutely no clue what I’m doing! Despite countless hours of research and many ghosted therapists (if the therapist that showed me fainting goat videos for like 15 minutes is reading this – please reflect), I don’t have all the answers – and that foundationally challenges how I frame myself as an advocate, and as a human being. 

I know a lot of us feel as though we’re supposed to have all the answers, while never expecting others to act likewise. But advocates are under an additional pressure – we’re the ones in consultations, panels, interviews, all to explain our experiences with accuracy, clarity, and (let’s be honest) enough censorship to make the whole thing palatable for a non-disabled audience. 

And that’s where we left off. My mental illness advocacy took a nosedive once my PTSD developed. I’ll save the PTSD deep dive for another day (or another year! life is tough sometimes folks!), but basically once I no longer understood what was going on in my own head, I did not feel educated or comfortable enough to get into others’.

While I began to understand my physical disabilities and advocate for them, my personal experience with mental illness was stagnant. I wasn’t getting better, I wasn’t understanding things, and I still hadn’t gotten help. My physical disability advocacy took off while I allowed my work with mental health to be sidelined. 

And now we’re caught up to speed. I still struggle immensely with my PTSD, but I can confidently say I have made incredible progress. I got help, I got a diagnosis, I stopped having flashbacks, and I’m now in an incredibly healthy, loving, and supportive relationship. I can’t remember most of the 2 year period between PTSD development and treatment (also another topic for another time), but I’m sure that Carly would not have believed this possible. On the GAD front, I’m as relentlessly anxious as ever – but I’m learning to accept help for it and work on coping mechanisms instead of treating is as some kind of character quirk. 

The new question I’m asking, and maybe you are too, is “where do we go from here?”

The first step is actively working on understanding my PTSD and GAD better. Not understanding my PTSD took me out of the advocacy game, so I’m going to have to confront a lot of personal brain stuff if I want back in. (This does not sound fun at all! Advocacy work is not easy folks!)

The second step is deromanticizing mental illness. Nothing about my false realities, auditory hallucinations, or hypervigilancy is romantic – it’s scary, and stressful, and challenging. The romanticization that primarily occurred on Tumblr towards depression and anxiety was not a reduction in stigma or a step towards normalization – it was and is a harmful phenomenon with real life consequences. 

The third step is bringing my mental illness and physical disability advocacy together. Only then will I be able to share my personal experiences with disabilities in more accurate, realistic, and comprehensive ways.

Oppression Olympics: Gold Medal Match – Mental Illness v. Physical Disability

“We need to make getting mental illness accommodations as easy as getting physical disability accommodations”

The first time I heard this, I was at a roundtable consultation and was in complete shock. I had never heard this before, and immediately saw it as a divisive and negative rhetoric pitting physical disabilities against mental illnesses. 

The second time I heard this, I was providing strategic advice at a consultation. My face immediately hinted at my disbelief (as it always does) and the facilitator asked me to speak on it – which I did, respectfully and hesitantly.

The third time I heard this, I was a participant at the Global Youth Disability Summit. When I shared how this was a harmful rhetoric, a non-disabled person tried to tell me that my interpretation, as a disabled person, of what the speaker said was wrong. I replied “I maintain my position, my interpretation, and my lived experience, but thank you for sharing your perspective!”

This comment is becoming more and more common as disability rights begin to enter conversations of equity and inclusion and the mental health crisis continues to rage on. While both of these issues deserve to be centred in mainstream discussions, the issue is that it is pushing us in the wrong direction. This comment implies that physical disabilities are easy to accommodate, and that mental health and physical disabilities are two completely separate experiences. As a disabled, mentally ill person – I believe this could not be more wrong.

Reality Check

Simply put, it is hell to get accommodations for physical disabilities. 

First, we have to receive a formal medical diagnosis – a significant barrier to those facing systemic oppression on the basis of race, gender, sexual orientation, class, you name it! 

Then, we need to get our physician(s) to sign off on paperwork requesting accommodations – and when you only see your specialist(s) every few months, your accommodations can be severely delayed.

After that, you have to get in touch with your on-campus disability service provider, or as I like to call them: on-campus disability service denier. 

From here, you’ll set up an intake meeting where you discuss what accommodations you would like to receive in your classes, assignments, and exams. 

Now, we have to opt-in to our accommodations in all of our classes and for all of our exams. This is made more difficult by terribly designed websites and short opt-in periods – and if you miss your period, you miss out on your accommodations.

Finally, you often have to self-advocate for your accommodations before ignorant and/or ableist professors, who might accuse you of being lazy, faking your disability, taking advantage of accommodations, you name it!

If you are fortunate enough to have professors upholding their legal and contractual requirement to reasonably accommodate you, you can skip the step where you contact your student union’s legal or advocacy resource as you fight for your basic accommodations.

Easy enough, right?

I will allow that many people promoting this rhetoric misunderstand the reality of getting accommodations for physical disabilities. For some reason, they always believe the only physical disability out there is having a broken leg, and that accommodations are limited to elevators and accessible ramps. 

I will allow for the fact that a misunderstanding is occurring, but I will also hold these people accountable for using my lived experience as some sort of bargaining chip-slam dunk on inaccessible systems, instead of recognizing it as the valid and consequential lived experience of their disabled peers.

Attitude Check

When I hear the comment as a mentally ill, physically disabled person, I get the vibe that these people believe that people with physical disabilities are less subject to ableism, discrimination, and stigma, and have no mental illnesses themselves. 

As someone with an invisible disability that has used mobility aids, I’d like to take a second to recognize able-passing privilege, where you are mainly able to go about your day without being subject to discrimination on the basis of disability. Don’t get me wrong, mental illnesses can definitely face discrimination and stigma, especially when they have physical manifestations. But there is an undeniable privilege in being able to play yourself off as non-disabled and avoid some unpleasant interactions.

Going back to the broken leg example, the comment implies that physical disabilities are easy to understand and face little stigma. After all, a broken leg is a broken leg – it usually doesn’t get worse, it’s usually temporary, and no one blames you for breaking your leg. But summarizing the physical disability experience into a broken leg is incredibly problematic! Physical disabilities are incredibly diverse and manifest in many different ways. Speaking as someone with a chronic, episodic physical disability – how my disability presents itself and the accommodations I need vary day-to-day. Compared to a broken leg, that’s much harder to understand! 

The broken leg monolith also implies that accommodations for physical disabilities only include elevators and accessible ramps. Not only is this wildly incorrect, it constrains the expansion of new accommodations! At my current school, I’ve been offered a laptop, extra time, and word processing for my hand dexterity issues, and ergonomic chairs, height-adjusted desks, barrier-free classrooms, and close-proximity classes for my mobility issues! If we only consider elevators and accessible ramps as physical disability accommodations, we deny so many people the basic tools they need to succeed. 

Check-In

Aside from dismissing the barriers, discrimination, and stigma faced by persons with physical disabilities, the comment ignores the intersection between mental illness and physical disability. The two are mutually reinforcing: poor mental health worsens symptoms of physical disabilities, and unaccommodated physical disabilities can worsen mental health. People with physical disabilities are twice as likely to have mental illnesses than their non-disabled peers, and ignoring this fact ignores how much the two “categories” have in common. We are all subject to systemic ableism, stigma, and discrimination. We are all being denied our legal guaranteed right to reasonable accommodation, and our right to equal access to education and employment on the same basis as our non-disabled peers. Many of us are both physically disabled and mentally ill! 

One last nuance before we wrap up: it is hard to get diagnoses and accommodations for mental illness. I would never deny that. I have jumped through those hoops and over those hurdles. Mental illnesses are subject to different types of medical diagnoses, procedures, and treatment. They face different types of barriers, discrimination, and stigma. They require different accommodations than physical disabilities. They definitely face misunderstandings and misconceptions of their nature and manifestations. I think we can all agree on that. But we should also all be able to agree that furthering the misconceptions and stigma towards other types of disabilities is a futile and undermining attempt to better our respective rights. Why are we trying to tear each other down when we can work together?

If you want to play oppression olympics and vie for that gold medal, I can’t stop you. But when you realize that the medals are only awarded to weigh you down, you’ll know where to find me. 

Arthritic Carly 2.0

Summary: Arthritic Carly is back folks! After nearly 6 months in remission, my joint inflammation is back and my immune system is ready to attack. My main challenge now is figuring out how to tell everyone the news without being subjected to pity. (If someone throws me an ironic celebratory party, I will probably attend.)

It’s hard enough to come to terms with my nearly half a year of joint inflammation remission coming to an end, but it’s even harder to share this news with others. After almost six months, it feels as though I’ve forgotten how to be arthritic, and those around me have forgotten I’m disabled. 

Like all things surrounding complex and chronic illnesses, I’m facing uncertainty. I’m uncertain if I’ll be able to get a hold of my old rheumatologist, I’m uncertain if I’ll be able to maintain my pace at school and work, I’m uncertain if I can keep doing all the things I love. Above all, I’m uncertain how to act. How to act, how to tell others, and above all – how to deal with others’ disappointment that my remission is over. Those closest to me do not feel pity. Their empathy echoes my uncertainty, as we both are uncertain of what is to come but know we must brace for the worst. For those not-so-close and not so arthritis-aware, they might be a little more unsure about what this means (literally – like what remission means.) While many of my peers and acquaintances have been fantastic listeners and do their best to understand my disabilities, most people don’t know arthritis can go into remission, let alone that remission is not forever. 

I won’t fault them for that – I also forgot remission doesn’t last forever.

There’s this strangest phenomenon that’s been happening to me ever since I became disabled at 16: gratitude where gratitude should not conventionally be. As I get overwhelmed by planning for my once again arthritic future, I’m grounded in gratitude that I entered remission in the first place. When I was diagnosed with juvenile idiopathic arthritis at 16, my paediatric rheumatologist found inflammation in nearly every joint in my body. As she poked and prodded me, and as my twin and mother watched on, I began to recognize the extent and severity of my arthritis, and began to feel angry that I and others allowed it to get that far. At 16, I never believed I would enter remission. 

Before we go further, please know that remission is not earned. You can change your diet, your habits, your lifestyle, and still not enter remission. Remission is not a value judgement of your worth as a patient, as a disabled person, or as a human – it just happens and no one knows why. What I can say about getting to remission is that when I was on steroids and biologics, the far-flung hope of remission kept me going through some very rough times. I lost my weight, my hair, my appetite, my personality – but I never lost that hope that things had to get better. And three and a half years later, things did.

Remission was fantastic. There is no shame in wanting to be in remission, and mourning when you lose it. There is also no shame in being disabled, receiving treatment, and asking for help. I don’t believe these things have to be mutually exclusive. In remission, I started my second year of university, aced my classes, rocked my extracurriculars, and fell in love. I had energy and optimism in ways I never had before – knowing that I was temporarily off treatment and that treatment worked was enough to sustain me in doing things I used to think impossible. I became a star student and never missed a class, I was a stand-out employee and never missed a deadline. And now, I’m still doing all of these things – just with active arthritis. 

Losing remission can make you feel like your world has stopped spinning. Like everything comes crashing to a halt. But it doesn’t – life has (a sometimes very inconvenient) way of carrying on no matter what you’re going through. Losing remission won’t change who I am, in the same way having arthritis doesn’t change who I am. I’ll still give loud, energetic takes in class – I just might be sleeping on my desk in between them. I’ll still deliver at work and love my job – I just might take a break during meetings. I’ll still be me, the same way I was me at 16 with active arthritis, at 20 in remission, and still at 20 with active arthritis. 

Science Breakdown

Juvenile idiopathic arthritis (JIA) is an autoimmune condition primarily causing inflammation in the joints in patients age 0-16. As JIA is a childhood disease, as patients age they either “grow out” of JIA and the disease goes away on its own, or they receive an “adult” diagnosis – which can include rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis. All autoimmune disorders can enter phases of remission, where a patient’s disease activity is paused. Remission can last weeks, months, years, and even for the rest of someone’s life. It is not uncommon for JIA patients to experience a few periods of remission within their lifetimes. The cause of remission, much like the cause of JIA, remains unknown. 

Welcome to the Blog!

It does not feel humble to write a blog. It seems to give the general impression that I am an expert, qualified to speak on anything and everything disability. Please know, this is not the case.

Like any disabled person, I am not a monolith. Just because I have some disabilities does not mean I am qualified to speak on them all, or to speak for everyone with my disabilities.

This has become a fairly rehearsed disclaimer, but one that still irks me. Of course I can’t speak for everyone, of course I am confined to only my personal experiences. But time and time again, I am treated as a monolith, as an inspiration, as someone to be saved or protected or coddled.

When telling non-disabled people about these experiences, I’m often met with wide eyes and nodding heads conveying a “Of course! How could others be so ignorant!” But by the time our meetings are over, the wide eyes and nodding heads give way to parting words of “thank you for your bravery in sharing your experiences” and “thank you for your impactful perspective.” Ignorance prevails, but under the checked box of “consulted with stakeholders” and a warm thank you email.

Nothing about disability is easy. It is complex, and messy, and confusing. In the disability community, the infighting and cross-disability ableism makes matters worse for the non-disabled onlooker. To those without disabilities among us, I invite you to be confused. And overwhelmed. And frustrated. If you are not feeling this way, I have failed you as an advocate by sanitizing my experiences with disability. If you feel like giving up and turning away, I will have succeeded in my duties, and if you choose not to give in, you will have truly begun your allyship journey.

And for those of you with disabilities, challenge me. Challenge my beliefs, my perspectives, my values. Hold me accountable for positively contributing to the disability rights movement, and I will return the favour. In advocacy, we often forget to write for the communities we serve. So, I will write for you, for myself, for the community, and for the allies. I encourage you to do the same.

With non-disabled folk monopolizing the conversation, funding, and platforms, we need more disabled voices in the disability movement. The fact that this has to be articulated shows how much we are up against. To my disabled peers, your voice matters. Your experience matters. You matter.

Disclaimers aside, promises made, and audiences addressed – welcome to the blog. We have a lot of work to do.