Young Adults

Jillian: I think one of the biggest adjustments was just being in my mid-twenties, enjoying the best part of life, and having to step it down a notch. It definitely impacted my social circle too. That was what it was all about, going out to the cool places in Toronto and the restaurants, going for drinks after work. It really was hard at the beginning. I feel like I missed out on a lot. And even when I was around, I was so uptight at the beginning, and I still am sometimes, because I’m like, “I don’t want to get sick” and “I have to go to bed now. I’m going to get really run down if I don’t.” That’s kind of my mindset now, which is sometimes a little annoying.

I think the biggest sacrifice was just that kind of stuff. Missing out on things with my friends and having to take a back seat a bit. But at the same time, it did probably really help me get into remission. I’ve, you know, concentrated on different things like working out. So it’s the pros and cons. But I think that one of the biggest things was just being 25 and, instead of celebrating, I was crying at home because I couldn’t even go out for my birthday, and I just always wanted to go home. I would leave Toronto every weekend and my friend would get to party in our condo or go out with friends, and I’d just go home and cry at my mom’s. So I feel like I lost a little bit in terms of a couple of years. But I also made the most of my twenties that I could, and I had the best times with my friends when I could.

Allyson: Oh wow. Yeah, I think my life just got turned upside down. Before I got sick I was very career focused and just work, work, school, work. That’s it. That was my focus. After I got sick and I couldn’t do that job anymore–like I just couldn’t do it, I didn’t have the energy to do it–I just felt, literally, what is my purpose in life? It made me evaluate what I am doing and why am I here. That’s when I actually turned to religion as well. I felt like I had to find a different way to approach my whole life. I literally changed my life completely after that. That was definitely the biggest turning point I’ve had. And yeah, like I’ve said, even with my career, even though it’s going sort of in the same areas I wanted to initially, I think that socially, my family, everything, my priorities changed a lot. From strictly career to like, okay there are other things more important in life than just your career and your job. I would say my advice is that it’s not hopeless and seeing a different path for yourself might actually be a positive thing. So even though you’re sick and it’s hard and it’s difficult and a struggle, it might be the thing that you need to make positive change. Because it definitely was for me. It forced me to make a lot of positive change for myself.

When I was younger, I was debating between being a Child Psychologist or an Archeologist, but being diagnosed with lupus, I cannot be out in the sun too long and I cannot overexert my body. I always need to be where I have close contact with specialists and doctors, because at any time I could have a flare up. I cannot always be on my feet for a long time because of the joint pains and arthritis. I had to cancel that idea and try to figure out other career paths. I was fortunate that I was only 17 and had not started university yet. So, it was not like I had already invested so much money and time into something and then had to go back to the job board. I decided to study Psychology at the University of British Columbia. I would later add Anthropology and got a double major degree. I am also passionate about helping kids, especially at-risk youth and youth living in poverty to make wise choices and rise above the situations that are holding them back. My dream would be to work at a refugee camp, because then I am still near professional doctors but also able to do what I love. So right now, I am in the process of getting all that experience so that I can find my dream job and travel. It will allow me to do what I want to do but kind of tweak it a little bit, so it meets all the medical needs that I have.

Beforehand, I was working at a law firm a lot of hours. I was finishing my degree part-time. I wanted to finish my degree in accounting and business and then go to law school. [After losing my job due to disclosing my disability,] I’ve nixed the whole law school idea. But I’m really striving to get my accounting designation and working in that area. I have my internship at CIBC now, which is exciting. The [networking event for people with disabilities] I went to was called Lime Connect. They’re really good if you want to work in the business world. I ended up getting an interview for a summer internship. I didn’t actually understand what the job was until probably the third or fourth week that I was working there, but I’m really excited because it is in risk management. It actually deals with understanding laws that regulate the financial industry. So I am now within the legal area, but it also involves numbers and accounting at the same time. So it’s a combination of both. And there are a lot of different roles within this area. So I think it has changed my end goal, but I still have the same passions for the things I liked before I was sick. It has just sort of changed my perspective, and where I want to be, and the types of companies I want to work for. Lawyers are notoriously working a ridiculous number of hours and I knew I couldn’t do that anymore. That wasn’t going to be a reality for me. And even some people try to scare me with accountants, because with the big accounting firms it’s kind of the same thing. But with a lot of networking, you discover a lot of jobs that you didn’t know existed in the field you study.

I’ve found that I’m able to still do what I wanted to do even though I didn’t think I could. But you have to find your niche that works for you and say, “OK, this is what I’m capable of. What are the jobs that I can do in this area that are still going to allow me to have a work-life balance, where I’m not going to exhaust myself?” I think the biggest thing for people with our type of condition is just understanding your limits. Don’t let go of your passions just because you know you have these limits. You can still pursue them. You might just have to find a different way to do it. Look for companies that take that initiative and want to support people with disabilities. Join networking events with companies that take the initiative to hire people with disabilities and want to accommodate you. Look into the companies you apply for and be selective. I think that’s the best thing and that’s how you are going to have the most positive experience.

James: Well, the first question I asked when I was diagnosed was, “does it affect your ears?” That’s all I really care about. The answer to that is no, so that was nice to hear.

Learning to play the piano has been difficult because it’s a daily routine to get the practice down. I started on that, and then my fingers were in a lot of pain, so I work around it and use computers to do it for me.

[Working from home currently means I don’t] have our office chairs and whatnot, so I’m dealing with ergonomic issues. I had to buy some cushions for my chair. So things like that, comfort at work. That’s always been a struggle. And I just take breaks. At least at my old job, I would take breaks and go for a walk. And I kind [of don’t care if my boss has] an issue with it (laughs). Other than that, it doesn’t affect my ears so I should be okay in that.

Cristina: Probably the hardest experiences were in Colombia when I was newly diagnosed, when I got my first job and it required a lot of walking because we went to the disadvantaged communities in the city. I think probably when I felt depression was when my boss, who was one of my previous professors, said, “You know Cristina, I know you are extremely professional and you’re very smart, but I cannot renew your contract because of your disease.” That was devastating. I used to do a lot of research at the university, so one of my mentors said, “Well I have a research assistant position, do you want to take that on?” So that was easier. That was more of a desk job. I didn’t have to go anywhere and I was even able to teach at school. It was really fun. But again, a few days that I was really ill, my boss or my mentor said, “So what now, do I have to hire a part-timer to cover the hours?” Agh, it just felt horrible.

Based on those experiences, I was very afraid of communicating to my employers here in Canada that I have RA. Because I was a new immigrant, I wanted to work. But then the first job, they were so supportive. Then I started feeling more comfortable and thinking maybe Canada was not as bad as back home. I remember, even from my last job, I used to travel a lot. As a dietician I used to go to long-term care homes, I used to go to the hospital. So I kind of wanted a full-time job where I just had to go to one place. Then an opportunity arose to work with the Ministry of Health at that time. I said everything, I told them “you know, I have arthritis,” and they still hired me. I said “really?” Since then, even though they know about my condition, when taking a sick day I still feel that pressure. I have always been very much vocal about my condition and I will fight for it if there was ever discrimination, and they know that. Maybe I had a different experience than others and I’m not afraid of speaking up. But I can see it as being a barrier.

Jennifer: Arthritis is not perceived as a young person’s disease, so I did have to spend some time educating my family and friends on the matter. I believe it’s so important to surround yourself with supportive and understanding individuals. However, it’s important to realize that it could be very difficult for someone to understand if they have never experienced it themselves, which at times requires patience. I started experiencing arthritic symptoms after starting university and living on my own (outside of my hometown), so the every-day struggles were rarely witnessed by my family. It was also very scary at times for me and for them, as I was experiencing very unusual symptoms and had no one in the area to tag along with me when I needed to go to the emergency room in the middle of the night.

I also really had to plan when and if I could spend some time with friends since a week filled with schoolwork, on-campus classes and medical appointments often took the best of me and I had nothing left to give. I often felt unable to participate in evening gatherings or certain outings because I was usually out of commission later in the day. Where I could participate, I was often in unbearable pain, which probably did not make me a very pleasant person to be with. Though, through this, you find out who your true friends are and who is really going to be there for you at your worst.

My fiancé is also incredibly supportive and is always willing to help me in any way he can, which I am very grateful for. Arthritis has become a crucial part of both of our lives and in some ways, it really has an impact on the future of our family. For example, the disease and treatments can greatly influence our journey to parenthood. We have a long road ahead of us, but one that I’m sure will definitely be worthwhile.