Hurting Myself with Positivity

I was 12 years old when I was diagnosed with several rheumatic diseases including severe polyarticular JIA, systemic lupus, Sjogren’s, and Raynaud’s phenomenon. I never thought that this would happen to me; I was always a healthy, happy child and a star athlete. For the longest time, I tried so hard to get better by doing everything they told me to do. I took all my medications, radically changed my diet, and practiced my physiotherapy, but in the end, nothing helped.

Through all this, it was difficult to keep a happy face as I watched myself deteriorate and not be able to do the things I used to do. Every doctor’s appointment was a disappointment. I watched as my peers attended school and played sports. On the other hand, I wasn’t even able to get out of bed. I saw so much happiness around me that it made me so unbelievably jealous.

I constantly felt that I needed to be a role model, and my story was perfect to bring one to life. But does a role model have this much sadness and hurt inside them? When asked how I was doing, I was constantly expected to say “great” or “awesome” but that was far from the truth.

They say that to overcome any battle you must always smile. I used to think this was true, but when my smile became so forced, I knew I couldn’t lie to myself anymore; I was truly falling apart inside. This is when my positivity became toxic. Positivity becomes toxic when some phrases are used to downplay our emotions, feelings, and symptoms. Toxic positivity is the belief that no matter how difficult a situation is, you should always keep a positive mindset.

The medications I was on made me very sick and cranky, but I was told by doctors and my community that “it just takes time”, and “you should get better soon”. I was also told that for treatment to work properly, I must have a positive attitude, even when I know that it’s not working. Positivity felt very unattainable and I was constantly disappointed by the idea of keeping a smile on; it was unrealistic because I was truly grieving.

When I first started to advocate for myself, I was dismissed for being too negative and not in a clear head space.

At one of my rheumatologist appointments, I was given the sad news that my thumb was done for– it may never move again. It had been stuck for a long time, but no doctor listened to me. I started to cry uncontrollably, and I was shunned and told it would get better with the right mindset. It was until I had surgery a year later, not my positive attitude, that I was able to move my thumb again.

I am fortunate enough to have the support of my family, who allow me to be myself, and cry when I need to– a huge contrast to what people believe, allowing myself to feel these “negative” moments when it’s necessary, and talking through my “pessimistic” emotions has helped me to find the strength to continue to fight my chronic illnesses.

Positivity is good for you when it’s in the right proportion, and it feels authentic. It can be good for physical health and well-being because being negative all the time is not good either. When it’s forced, that’s when it feels superfluous. It can escalate to toxicity when you start to feel so emotionally drained by always being told to be something you’re not and not feeling validated.

As I reflect on my experiences as a young person with rheumatic conditions, I’ve learned that it’s okay to be sad sometimes but ultimately finding the right dose of happiness for yourself is best to lead a fulfilling life.