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CPSI Share                                                  
11/13/2019 1:00 AM

Ayleen Swartz photoHi, I'm Ayleen Swartz. I've never written a blog, so here is a bit about me; I love volleyball, hiking, skiing, ultimate frisbee, basketball, canoeing and hockey. You get the point; I like anything athletic and outdoors!  

Two years ago, at the age of 14, I was stoked to head into beach volleyball season, after spending my previous summer at the Ontario Summer Games playing volleyball. I had just finished two spring tournaments when I suddenly got sick. For the first week, my parents and I thought it was a simple stomach flu, but I wasn't getting better. After two weeks I had lost 15 pounds, had no energy, couldn't eat without becoming nauseous, and I had what appeared to be pink eye in both eyes. I had other symptoms too, but they're so personal I don't feel like I can share them to this day.

One day, a few weeks into my illness, after being to a walk-in clinic and waiting on test results, I woke up and my knee was dramatically swollen – like a water balloon taped to my knee, and this was on top of all my other symptoms. I was totally freaked out. My mom and dad took me to the hospital, it was July 1st.

The hospital was great, but the doctors couldn't figure out what was going on. At this point I had been sick almost 21 days, without a diagnosis. My local hospital called a specialized paediatrician and she had the answer. I had a salmonella infection that led to a reactive arthritis. She immediately started steroid medication and connected me with a paediatric rheumatologist at Sick Kids Hospital in Toronto.

I was so happy to have a diagnosis, but kind of bummed too. The steroids made me feel really sick and have gross side effects.  Combined with the huge amount of swelling in my feet and knees it all meant I couldn't play volleyball. I also missed a summer school trip I was excited to attend with my friends. Little did I know back then, my temporary illness would become a longer chronic illness and I would be treated for arthritis for two plus years. This meant physio, acupuncture and trying a lot of different medications.

As a 14-year-old, you don't expect to use the health system and you truly can't picture what it's like to have doctors not know how to treat you. In my case I was lucky. From the time I became ill, through to my diagnosis and to my treatment today, my parents have been huge advocates. My doctors are inclusive and always involve me in my care decisions and I feel like I have a say in my treatment plan. My mom is a nurse and I have heard this is not always the case. I am grateful that I have not had a bad experience and I truly appreciate my doctors treating me like my opinion matters.

Being a chronic disease patient is not easy. I need to remember to take my medication daily. People often don't understand what it is like to be in chronic pain. They sometimes make assumptions about me and my abilities and cannot see the swelling or pain I have. My friends don't always understand when I cancel or am extra tired when we make plans. It can be hard as a teenager to say no to parties or hanging out when I know my body needs time to rest and heal.

If I had to provide advice to anyone based on my own experiences I would say:

  • Talk to your parents and doctors. Don't be silent. If they are choosing treatment and medication for you, be part of the conversation! You're the one who will have to cope with the side effects and illness symptoms, so make sure you're heard.
  • Don't be afraid to speak up when you don't understand. Often my medication side-effects and my treatment confuse me. My mom has helped me talk to my doctor and better understand when we have changes to the plan or meds.
  • Write it down. Sometime I am not good about remembering where the pain has been, or the severity of the pain between my doctor visits. Learning to own my health history and take accountability to writing it down has been really helpful!
  • Tell family and friends about your illness. The more they understand, the more they can help. My family and friends are some of my biggest supporters.
I know getting sick and being sick is awful, so I hope for everyone to have the great experience I have with my healthcare team. Don't be afraid to be part of your health team. You're the one who is ill, so always speak up!