Send Me More Stories About Chronic Illness
Every weekend when I was a kid, my two best friends and I went to Canada’s Wonderland, a theme park near where I grew up. One of my friends was too scared to go on the rides at first, so she would always make excuses, like” “I think it’s too fast for me” or “I’ve never been on a ride that goes upside down before.” But each time, we’d use peer pressure to convince her she’d love the ride anyway, and each time, the smile she wore on her face as she exited the ride proved we were right.
So when I got diagnosed at 13 with Chronic Fatigue Syndrome, my friends tried to use the same tactics on me. Thinking they were helping me, they would use peer pressure to convince me to come for a bike ride or a swim. Except unlike at Canada’s Wonderland, the aftermath didn’t prove them right: instead, if I gave into peer pressure that day, I’d be bedridden the next day more often than not. But I didn’t know how to say no. I was so terrified that my friendships would become casualties to my illness that I pushed myself beyond my limits, sometimes becoming too exhausted to do my school work or even wake up for class the next day.
As the years went on, the pattern repeated. My friends kept pressuring me because they thought they were helping me have fun or “get better”. In turn, I felt like nobody understood me or my illness. I felt like I couldn’t be myself around my friends anymore. It felt like they didn’t believe my illness was real. But I never spoke up. I had already lost so much; I didn’t want to lose my friends, too.
I felt like I couldn’t be myself around my friends anymore. It felt like they didn’t believe my illness was real. But I never spoke up.
I continued moving through life without talking about my illness. I started University where, on top of increased academic pressures, I was now living on my own and taking care of myself. Finally, in my third year of University, my illness reached a crisis point, and after meeting with both a therapist and an occupational therapist, I realized I needed to take a hard look at how I was living with my illness to keep going forward.
Setting Boundaries With Myself
As I examined the life I’d lived so far with Chronic Fatigue Syndrome, a couple things stood out. The first was that I wasn’t getting the support I needed from my friends and family. The second was that I didn’t know how to ask for that help, because I was having a hard time identifying my own limitations.
Working with an occupational therapist taught me that the first person I needed to set boundaries with was myself. I wanted to take a full course load, I wanted to go out with friends, I wanted to explore the new city I was living in, I wanted to make plans to work and travel after University. But if I didn’t learn to manage my health better, I wasn’t going to be able to do any of those things.
So I dropped several classes to take a reduced course load. I made time for yoga and meditation, even if that meant missing out on social plans. I made time for rest, even on days where I felt good. I acknowledged that everyone—even without a chronic illness—needed to take sick days and mental health days.
Learning To Set Boundaries With Others
When I saw how keeping clear boundaries with myself was helping my health, I knew that I needed to start setting boundaries with my friends and family too.
Shortly after this, my best friend came to visit me at University. I loved introducing her to my new friends and showing her around the city One day, while hanging out in a group, everyone decided to go to a bar. I was already feeling tired because of all the excitement of my friend coming to visit, so I said I was going to go home to rest. My friend began pulling out all her old stops, pressuring me into coming, but I stood my ground: I couldn’t go.
My friend was disappointed, and went off with the others. When I got home, I was terrified I had hurt our friendship, but I knew we couldn’t continue to be friends if I felt bitter and resentful of her for forcing me past my health limits. I knew that if I wanted to save my relationships, I had to set boundaries.
When I got home, I was terrified I had hurt our friendship, but I knew we couldn’t continue to be friends if I felt bitter and resentful of her for forcing me past my health limits.
When she got back, she apologized for pressuring me, and even asked for advice on how she could set better boundaries for herself! My first experiment with being strict about what I needed had been a success.
How Setting Boundaries Rebuilt My Relationships
When I started being clear with my friends and family about what I could and couldn’t do, there was a sense of relief all around.
It turned out the people who loved me were feeling just as lost as I was. They wanted to be more supportive, but they didn’t know how. Often they thought they were helping by pushing me to do something; they didn’t realize it was making things worse.
It turned out the people who loved me were feeling just as lost as I was. They wanted to be more supportive, but they didn’t know how.
It also taught me that my relationships were based on a stronger foundation than merely doing things together. If I was having a bad day, I could invite some friends over for a tea and chat rather than feeling like I needed to go out. If there was a family holiday, I felt comfortable sitting down and letting people come to me to say hi rather than feeling like I needed to “work the room”.
Learning what I needed and sticking to my boundaries helped my loved ones better understand what I needed and be able to support me.
Being clear with my boundaries opened up a path for my loved ones to also express their needs. Instead of being afraid of losing my friends because of my illness, I now saw that opening up only made our relationships stronger.
