Cote's Journey with RA, Narcolepsy and Service Dogs
What was the process of getting your RA diagnosis?
For me the process of getting diagnosed was a bit of a wild ride. When I was 12 and in middle school, I started to feel really physically exhausted all the time, and was having trouble doing the things I used to do. I played ice hockey, was in middle school band, and was overall a fairly active person, but for some reason I was feeling terrible all the time. I started developing bumps on my finger joints and couldn’t hold up my saxophone (a baritone saxophone at that) anymore. I even remember telling my band teacher and having him immediately dismiss me and tell me I needed to just get used to it. Eventually I started missing school too much, and wouldn’t get out of bed, so my mom took me to my pediatrician. She saw me, heard my complaints, and then told my mom something I’ll never forget: “Your daughter is just lazy. She would feel better if she’d eat a proper diet and actually exercise, but she doesn’t. She’s just complaining this much so she can stay home from school.”
So I figured she must be right, right? I was an exhausted 12-year-old with no understanding of how to stand up for myself, to stand my ground and tell her, “No, I’m not lazy, I hurt.” because I was just a kid. As far as I was concerned, medical professionals knew best and had my best interest at heart, but it turns out that’s not true.
Fast forward a year, I was still hurting a lot but forcing myself through it because I didn’t want to be lazy. I was still playing ice hockey and in band, but found that my wrist was starting to hurt worse than anything. I did my best to never bend it, because that hurt more than anything, and continued with my regular 13-year-old life. Until, eventually, I fractured my foot playing ice hockey. It was nothing too serious; according to the podiatrist, it was just a stress fracture. But after seeing my X-rays, he decided he wanted to do bloodwork as well. I didn’t understand why — it was just a fractured foot, it shouldn’t have required blood work, but regardless my mom took me to get the labs done. Lo and behold, my labs showed off-the-chart inflammation markers, and I was officially diagnosed with rheumatoid arthritis by my podiatrist.
A lot of people are relieved when they find the reason they’re in pain, but I wasn’t relieved — I was livid. I was furious at my pediatrician for brushing me off as a dumb, lazy kid, for making me feel like I’m just not trying, and making me push myself harder than I ever should had. I was furious because two months after my diagnosis, I lost all movement in my wrist. The inflammation got so bad I could no longer bend it at all. I was furious because if my pediatrician had just listened for one single second, I would still be able to bend my wrist and not have the irreversible joint damage that I have now. I could have more trust for my doctors, and maybe not constantly doubt myself and how I’m feeling. I would not have this imposter syndrome towards the pain in my body. But no, the damage was done both to my physical health and mental health, and I had to deal with that plus being put on chemo and other heavy drugs. So I think it’s safe to say it wasn't the most direct diagnosis.
How has RA impacted you?
RA has honestly had a positive and negative impact on my life. I once had a friend ask me if I would choose to never develop RA if I could make the choice (because they knew a lot of deaf and blind people wouldn’t choose to have their sight/hearing back) and I responded with no hesitation that 100% yes I would absolutely choose to have never developed RA. However, I say that knowing that’d I’d probably be an entirely different person if that were the case.
My doctors told me that having a lifelong chronic illness like RA meant I’d have to work harder than everyone else just to keep up. I’d need to find a job that could accommodate my disability which would be difficult, and I wouldn’t be able to take on too much responsibility. Maybe I took that as a challenge, or maybe I was just overcompensating for not being able to do as much as I used to, but after a few years of wallowing, I started to work harder. I had classes from 0-7th period so I was at school from 8AM-4PM. I volunteered at libraries and at bird rescues, and on top of all that, I got a part time job in my senior year of high school. Not only that, but I did all this while also going to the hospital twice a month for 4-6 hour long infusions that would knock me out for two days afterwards. My body was trying to force me to slow down, but I was going to fight that with everything I had.
Admittedly, this backfired a lot more often than I’d like to admit. It was like my body was a bank account that I kept overdrawing, and boy, were the overdraft payments high. I worked myself in multi-day, sometimes week long rest periods. I’d be stuck in bed, and in pain because I pushed myself too hard. Honestly, I still haven’t learned my lesson from those, because even now I work two jobs and volunteer.
Having RA created this weird work mentality where I feel like I have to work myself to the bone while also feeling like I’m still just a lazy kid. It’s difficult to figure out what an appropriate level of work/rest is after I spent so long having my doctors think I was doing too much with all my responsibilities I took on, and most other adults in my life thinking I wasn’t doing anything at all because of how often I stayed home and missed them. I wonder a lot if I would be this driven if I wasn’t chronically ill, or how much I could actually get done if my body would just work with me instead of against me. But I also know that I probably wouldn’t be as patient, or have as much of a backbone as I do now if I was never diagnosed. I probably would have never volunteered, because I wouldn’t have this understanding that the extra energy I do have could really benefit someone else who maybe doesn’t have that energy, and thus would never have the amazing job I have now. Whether good or bad, RA has impacted my life more than anything in the world ever could.
What are some misconceptions around RA that you often encounter/that make your daily life more challenging?
Having an invisible disability has been one of the most exhausting things on Earth, and that’s not even counting the actually painful part. So many people have such high expectations of me, even when I disclose my disability, because I “don’t look disabled.” I’ve had to leave jobs and volunteer positions due to a refusal of accommodation and flat-out ableism. I had one supervisor at a volunteer position tell me that “it would be really easy to kill (me)” when I was 19, which led to me abruptly leaving one of my favorite volunteer positions. On top of that, I’ve had people scream at me for parking in disabled spaces, and follow me to my classes while telling me I’m a bad person for parking there. Even just casual thoughtless comments of “I thought arthritis was for old people” make my day just a little bit harder. It wears on you after a while.
What has helped you manage your RA?
Medication has helped my RA though, unfortunately, I haven’t found that perfect dose and medication yet — even after almost 10 years of being diagnosed. The ones I’ve tried have still helped marginally. Other than that, the main thing that’s helped me manage RA is knowing myself and knowing how many spoons everything will take me. This helps me keep my health and responsibilities balanced.
What made you decide to get a service dog? What has that process been like?
A service dog was something I actually considered for quite a few years. I was interested in beginning the training process with one in high school. However, I wasn’t able to actually begin the training process until very recently. It’s been a long and difficult journey, from having to make the decision to seek out a puppy from a breeder instead of adopt (many rescues refuse to adopt to people seeking out a dog to train for service work unfortunately), to working on training and dealing with the public during training. It’s been amazing, and I’ve learned so much and still am learning so much, but it definitely hasn’t been easy.
What are some things that you wish people knew in general about being disabled/chronically ill? Regarding accessibility, social life, work, living, etc?
This one is a big one that’s been on my mind lately a lot, actually, but I wish more people understood that there’s more to helping a disabled person than just treating the illness with medication. For example, right now I’m in a really severe flare up and have been missing a lot of work as well as missing out on social activities. I’m 22, so work and socializing are understandably a large part of my life, and because of this I’ve been pushing to get a manual wheelchair from my doctors. Now, my doctors understand that I’m in a massive flare up, and have been for nearly a year, and that it’s progressively getting worse and preventing me from doing any of the things I’d like to do. Despite this, my doctor’s nurse practitioner has been pushing back on a manual wheelchair and instead keeps suggesting a companion chair (one that is pushed by other people). A big part of treating disabilities is maintaining quality of life, not just treating it with medication. My life will not be improved with a companion chair, because I still won’t be able to go to work on my own, or go out with friends without needing someone to push me. I wouldn’t maintain any of my independence, still wouldn’t make it to work, and would have to ask my friends to help me wherever we go. My doctors aren’t concerned with that though, and care about treating the illness in front of them, and not helping me, the patient. I feel like a lot of people have that mentality with disabled people; they see the disability, and then the person.
Not only that but can I just say I’m ready to throw hands with every single person on this Earth that thinks it’s ok to pass their pet or ESA off as a service animal? To those people specifically, you are hurting service dog teams every single time you do this. You brazenly abusing the few rights disabled people have is the reason why we have so few rights and protections to begin with. Your pets and ESAs are NOT meant to be out in public, and can cause harm to other people, and actual service dogs. I know someone whose service dog was killed by a pet dog that someone was passing off as a service dog, and that was bad for literally everyone. The service dog died and the pet dog was euthanized. I’ve tried to explain this to people, when they lie about their poorly behaved ESAs being service dogs, and ALWAYS receive massive amounts of push back from it. I’ve been called “aggressive” for trying to politely stand up for my own rights and correct other people’s misconceptions, and it’s exhausting.
For a rough day, what three (or more) things are in your survival toolkit? What motivates you to keep going?
Easy foods, cartoons, and loose clothes are my three musts for really bad days. When everything hurts, it makes you feel sick, so easy foods like plain noodles and bread are super important to have. I personally like watching cartoons when I’m doing especially bad because they don’t require a lot of attention, and they make me laugh. Not only that but cartoon characters are always so motivated to get through any obstacle they have, no matter how hard, and that motivation is nice to see during personal hard times. Last, and most important, loose-fitting clothes are absolutely necessary: arthritis impacts my hands really severely, which makes simple things like buttoning and unbuttoning jeans and pulling snug shirts over my head really difficult. So the best solution for that is loose, comfortable clothes.
Days like these are hard, but I’ve got a lot of important people in my life that motivate me to keep going, as well as the knowledge that it gets better. Rough days are hard, but the one plus side of an inflammatory disorder is that sometimes they get really bad, and sometimes they get a lot better, so I always know there will be a day where things hurt less in the future.
What has your experience with narcolepsy been like?
My experience with narcolepsy has been, for lack of better terms, exhausting. Having both Rheumatoid Arthritis and narcolepsy makes for a messy game of “Am I tired from the RA, or am I tired from the narcolepsy?” which is a game without any winner. This has caused a lot of issues with school, work, and keeping many friendships, because it turns out someone who’s always chronically tired isn’t the most reliable. Narcolepsy isn’t just being sleepy, it’s the brain being unable to complete a full cycle of sleep in any amount of time, resulting in constant chronic exhaustion. Not only that, but my specific case of narcolepsy has resulted in regular sleep paralysis. There’s a part of sleep called REM sleep, and REM sleep causes you to have incredibly vivid dreams while also shutting your body off to prevent you from moving and hurting yourself in your sleep. Partially waking up from REM sleep causes something called sleep paralysis, which is where your body still hasn’t turned back on after leaving REM sleep, so you can’t move and you still are partially dreaming so you often hallucinate. This usually leads to terrifying hallucinations, and is what actually gave me my first panic attack as a kid. Sleep paralysis doesn’t only happen to narcoleptic people, but being narcoleptic does make it happen more frequently.
That’s been my worst experience with narcolepsy. I can get used to being exhausted all the time, but the sleep paralysis is what makes it really hard. A lot of people see sleep as a recharge, or an escape from the day, but it’s just one big nightmare to me.
When were you diagnosed and what was the process like? Were you previously misdiagnosed?
Although not necessarily a misdiagnosis, I was diagnosed with sleep apnea in my early teens. It’s not wrong, but it’s far from the main issue with my sleep, and was often used to explain my trouble with sleeping. I was diagnosed with narcolepsy when I was 16, about three years after being diagnosed with RA. Before I finally saw a neurologist the process wasn’t great. Most doctors dismissed me, saying that I was just a lazy teenager, or that it was just an effect of the arthritis. Luckily I had my mom with me throughout all the appointments; she advocated for me, and didn’t back down from doctors who didn’t want to look into it. Eventually, I got an appointment with a neurologist, and was sent for MRIs, and then after that a sleep study. A sleep study is an overnight appointment, where they hook you up with electrodes all over your face and body, have you sleep in an observation room, and wake you up periodically in the night to test how quickly your brain enters REM. According to my neurologist, my brain went straight to REM sleep almost immediately after every time they woke me up. After that sleep study they slapped a “congrats, you’re narcoleptic, now what?” paper in my hands and sent me on my way.
What misconceptions do people have about narcolepsy? What has your experience been with this?
I have narcolepsy without cataplexy, which means that I am tired all the time, but do not have the “passing out randomly” side effect that is always associated with narcolepsy. Most people assume narcolepsy is just that when, in fact, it’s actually a two-part diagnosis and a lot more complex than that. Not only that, but I get a lot of jokes about how funny it would be to see me have a cataplexy attack (again, people don’t understand they’re two different parts), or jokes about how much I must nap. If they’re going to make weak jokes about it, the least they could do is actually educate themselves on what narcolepsy and cataplexy is before doing so. Narcolepsy isn’t just the feeling of being really tired, or even just cataplexy: it’s the brain being physically unable to regulate sleep on its own. It’s not just sleepiness, it’s a neurological chemical imbalance of hypocretin in the brain, leading to chronic exhaustion. The brain cannot complete a full sleep cycle, which means that unlike most people, someone with narcolepsy cannot physically get a good night's sleep. No matter how much narcoleptic people sleep, they will always wake up just as tired. I suppose that explanation isn’t as funny, or easy to dismiss as “Haha, so you, like, pass out a lot?” though.
What do you wish people knew about narcolepsy?
I wish more people were aware of what narcolepsy actually looks like, and its effects. It’s really not difficult to do the research, but I still find myself having to re-explain what narcolepsy is to every new coworker, teacher, and classmate I come in contact with. I never mind talking about it; it’s just having to correct all the misconceptions, and jokes that get old after a while.
Cote (they/them) is a librarian and spoonie currently training their service dog, Buffy to assist with their RA and narcolepsy. They are passionate about environmental welfare and aspire to bring positive change to the environment. Follow their journey together on Instagram @buffytheservicedog.