Chronically Joyful

To be questioned when you’re struggling invisibly adds an additional layer of pain to the “unfortunate nonsense” cake. A gentle reminder that we don’t know the full scope of what anyone else is experiencing in their lives, so it’s best not to make negative assumptions. Living with an invisible illness comes with a territory I never felt prepared to manage fully until recent years. 

To be forced to tell my story before I was ready to accept it; to continuously tell people that I did not in fact have an accident, I just happened to be born this way; expressing that I’m having a hard day cognitively to a room of people who have never had to understand; to only receive true respect (more often, unwanted sympathy) when things become visible. 

Living with a Chronic Illness has its challenges, but when it is also an invisible Chronic Illness, it becomes a whole different calibre entirely. When we can’t see something or perceive it with any of our 5 senses, it is dismissed as not being real. “I’ll believe it when I see it” applies in so many ways that become harmful; in living with an invisible illness, it has changed my entire perception of life. 

I choose not to believe it when I see it – instead, I’ll believe it fully within myself and then it will show itself. Every monumental and important concept was first imagined before it became a reality (ie, the light bulb!); I apply the same principle to my health. If I truly believe in something, it has the tendency to come to fruition, using my most recent MRI results as an example. 

What the last 11 ½ years have taught me about this is that even if I believe in myself fully, it does not mean that others will follow. It’s a wild feeling to know that I have Multiple Sclerosis but still be questioned on if I really do because most of the time I’m blessed to not use mobility aids. I have been asked if I’m really having blindness in my eyes because I am still choosing to show up to work (from home to avoid the danger of driving LOL). Many of the people in my life either choose to ignore my illness entirely or make it the cause for my own occasional shitty behavior. It’s an interesting balance to work with and one that I certainly did not ask for. 

While I may not often look sick, it doesn’t change the fact that I currently am (and I say currently with intense optimism that one day, I will not be). The crazy part is that when I sometimes do look exactly how I’m feeling, others are quick to generalize reasons for the visibility. Whether it be that I am injured, “attention seeking,” or any other excuse others can quickly use to slap a label on me to refute the actual reasoning. 

At the end of the day I almost never look the way I actually feel; when diagnosed with a chronic illness, you learn very quickly that life becomes easier when others can’t see the writing on the wall. I have become an expert in wearing a poker face on the days where I am in high levels of pain; while I maintain a sunny disposition naturally, it does not mean that I don’t still feel the full spectrum of emotions, I just choose not to share that visibility with the world. 

Many folks who live with a chronic illness (and even those who don’t but are just experiencing a particular season of life) live with an invisible illness. A true catch-22 is that these same people are punished when they look too sick and when they do not look sick enough. I tend to fall into the latter category most often, but it does not make it easier by any means when I feel the consistent need to justify my choices and actions I take that have my best interest at heart. 

Whether we look sick or we don’t, we are all just trying to make it through another beautiful day with an optimistic outlook. At the end of the day, we are all human, we are one. Take a deep breath the next time you feel inclined to pass judgment on someone who “doesn’t look sick” or looks “too good to have that diagnosis.” Life is challenging enough on its own without pressure from strangers we don’t ask for; choose grace and choose compassion. We never know someone’s full story until they choose to share it. 

Assume positive intent, smile, and move on to the next part of your day. On behalf of those living with an invisible illness, we thank you and appreciate your help in creating a safe space for everyone to exist exactly as they are. 

As always, lovely reader, thanks for remaining Chronically Joyful with me. ♡