I’ve had a few friends reach out to me lately and ask how I keep going despite having a chronic illness. “How does it not bother you?” “You always have a smile on your face!” I can confirm that it does in fact bother me and yes, I do have a smile on my face because I refuse to be sad all the time! Sometimes I am really sad and that smile on my face is not genuine. I have always felt like I have an image to maintain and I don’t want people asking questions or drawing attention to myself.
I know I said my intention word this year was strength a few blog posts ago, but sometimes that’s hard to maintain. I’ve been struggling with some symptoms lately and it scares me. I’m scared of falling back into an uncontrollable flare and the life I’ve built for myself taking a dramatic U-turn. Sometimes I feel like I’m doing too much and need to clear some things off my plate so I can really focus on what’s going on internally, but then I remember I’m a fighter and not a quitter. It’s a hard dichotomy to be apart of.
Chronic illness patients are often asked the dreadful question of “On a scale of 1-10, what’s your pain level?” What feels like a 10 to normal people is probably a 5 to us because we are used to feeling unnatural levels of pain. Just one way that we show strength. When asked how we are feeling and we say “fine” (but we really aren’t), that’s another level of strength. The smile I carry on my face day-in and day-out is me being strong for others. Sometimes, on the inside, all I want to do is break down and cry but I know I can’t do that in public.
One of the biggest challenges I still face as someone with a chronic illness, and in remission, is feeling like I have to hide this part of me or make it sound not as bad as it really is. It’s not something I necessarily want to hide, but it’s not something to be taken lightly so I can’t undermine the severity of the disease. It’s going to stay with me forever, whether I am symptomatic or not, and getting others to understand this concept will forever be difficult.
Having IBD does bother me, more than you might think! It is an extremely difficult disease to understand and navigate, especially as a young adult. Instead of being strong for others, I want to be strong for myself and know when to give myself rest or to say “no” to things. Chronic illness patients often feel an immense sense of guilt and feel like burdens to others. We feel like we’ve lost the life we always dreamed of having for ourselves. It takes a lot of strength and courage to forego those emotions and come out on top. Sometimes it feels like drowning. It’s okay not to be strong all the time – we have to allow ourselves the room to breathe and process the emotions that come along with chronic illness. It doesn’t happen overnight.
Holding yourself together when it feels like everything around you is falling apart shows true strength of character.
Just a reminder that you are doing the best you are able to do today, and that is enough!