Living with rheumatoid arthritis

Could you please tell us a little bit about yourself?

 

My name is Ms. Endean. I am currently finishing my master's in Public Health and Social Policy.
I grew up in Vancouver, and then I moved to Victoria in 2018 to do school. I did a degree in exercise science and decided I really liked it here, so I wanted to stay. One of my favorite roles in my life is a house parent at SMUS!

 

Would you mind sharing a bit about your autoimmune disease and experience?

 

I have rheumatoid arthritis where my joints swell and it really impacts my energy. It hurts a lot in a kind of debilitating way. I play sports, so it really impacts that, with being able to kind of get through the day. It gets worse and worse throughout the day in mostly my ankles, my knees, and my elbows. Different things kind of trigger it as well, but it’s really complicated because I don't know what triggers it. Sometimes it's food, sometimes it's different activities, sometimes it just happens and I can't trace it back to anything. I've tried and experimented a lot of different ways to figure out what works, but it's definitely a work in progress.

 

How has your experience been with pursuing your passion for sports while having Rheumatoid Arthritis? 

 

Recovery is a lot harder. For example, right now, I play rugby and soccer and each of those are four days a week. Because rugby and running requires a lot of running, I should be doing weight training on top of practice, otherwise I'll get hurt. But since I’m in so much pain from my condition, I can’t do the weight training which causes me to get hurt more often. So it’s things like that that make me even more hurt even though I'm already hurting.

 

When did you first find out you had your autoimmune condition? How did you feel?

 

I found out when I was 18. I would complain all the time about growing pains. I thought I was still growing but I hadn't grown since I was around 13. My boyfriend told me that I was definitely not growing anymore, and that I should probably go get checked out. It took months and months, lots of blood work. And because I was doing so much activity, it was hard to tell, like, am I just sore? Is this normal? I didn’t really know if my own pain was normal or not because I couldn’t experience anyone else’s. But by 5 p.m., I couldn't really stand.
So I got checked out. Accessing healthcare is another thing in itself, it was really hard to get into seeing people. I went through four or five rounds of blood work before they sort of pinpointed it. When I was diagnosed, everything made sense. It was like, oh my gosh, I'm not just being a baby about how much pain I'm in. I felt justified in how I had been feeling. 

 

What are some challenges you have faced and how have you overcome them?

 

I think the biggest thing for me has been how it's impacted my energy, especially in times where I'm doing something that requires a lot of focus and attention. For example, in 2020, I wrote my MCAT. It was like, why can't I focus on things? It's hard to explain how much pain can take away your mental energy without you realizing it. I just don't feel capable. And going back to what I was saying before with getting diagnosed. It was a huge thing to be like, okay, it's not just me failing at things. And being diagnosed I think also just helps me manage my condition better. 

 

How has your mindset now toward your condition shifted from your mindset before?

 

I feel like it's kind of changed the way I think about diagnoses in general. I'm so professional with everybody getting diagnosed with anything and everything that they might possibly have, whether it's mental or physical. Being diagnosed I think helps a lot with just knowing yourself and having the information to be able to find tools and things that work for you. 

 

What would you want your peers or the community to know so they can support you better?

 

I think for me I love just knowing. I feel like when I am hurting, cause for me, the pain is the biggest part. It hurts so bad, it's hard to explain. I just need immediate people around me, not necessarily the world, but just my family and close friends to know how much it hurts. It's like when you get a stomachache or a headache and you need others to know that you’re struggling right now. I think it's hard to empathize with something you don't understand. 
So I would say that in general, I would just want people to be empathetic to those who have chronic illnesses or bedridden or whatever it is, because it really, really does impact you. It's kind of like when you get really bad period cramps where it's so debilitating, like even being kind to somebody in an interaction is taking all of your mental energy. 

 

Are there any important insights or lessons you learned through your journey? 

 

I think managing my emotions when I'm experiencing internal turmoil is probably one of the biggest lessons. Something that comes to mind is when you're hangry, you haven't really caught up to the fact that you're feeling irritable because you're hungry. And so you're acting in ways that you wouldn't normally act, that kind of go against your personality. And then there's kind of a guilt that comes with that when you act out of line with your intentions, beliefs, or values. So I think the main lesson is being able to recognize when I'm feeling irritable so that I don’t act unlike myself and that I don't experience a sort of feeling like, ugh, I shouldn't have done that. 

 

Do you have a message for kids who are going through something similar?

 

Get diagnosed. If something doesn't feel right, talk to people about how you're feeling because that's the easiest way that you can figure out that things that are happening with you aren't right. I normalized my pain for my whole life. As a kid, I would be up screaming and crying because of the pain. We had to get six ice packs so I could put it on every angle of my knees and elbows, and I would just lay like that. And I totally thought that was normal. So throughout all of my teens, I just struggled and was in so much pain. And then finally after being diagnosed, I was like, oh my gosh, I'm not crazy. So talk to people about how things are feeling because sooner or later someone will be like, oh, that's not normal. You should probably go get that checked out.

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Awesome, thank you so much. 

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Yeah, of course!