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?