I'm Unapologetically on 'Team Me' While Battling Crohn's Disease
I live in an active resort town, and as someone who lives with a chronic illness, I often find myself struggling to fit in with a culture of sport, activity, and extremes.
For many people dealing with a chronic illness, disability, or mental illness, it is a challenge to find the right balance, when illness is something that can often be equated with weakness. In my experience, I have found that people are generally sympathetic, but there is also a fair share of those who seem to think I can “fix” myself with the right attitude or behavior. While it is important to practice self care, no matter how hard I smile, or how much kale I eat, I still have a chronic illness.
Believe me when I say, like many others with Crohn’s disease, I have tried almost anything that provided even a glimmer of hope in changing my diagnosis. There have been years of tests, different medications, diets, supplements, meditation, counseling, naturopathy and anything that seemed to have even the smallest evidence of a higher quality of life. While all these things do make a difference, they are not a cure or a permanent fix. It is a constant challenge between being kind and gentle to myself, and pushing myself to keep trying and challenging limits.
For the most part, I make it through the day to day, getting myself to work, and then having the energy for one or two small tasks outside of that. However, a breakdown seems to happen to me once or twice a year.
It tends to occur after a prolonged flair up from having Crohn’s disease, or lingering effects from the chemotherapy treatment I underwent two years ago, for non-Hodgkin’s lymphoma, which still affects my immune system. I reach a point where the gradual pushing of my limits leads me running on empty.
This leads to a cycle of withdrawal from my normal day-to-day activities. Sick days are taken from work, calls may not be returned to friends, I may not be able to go outside for days at a time.
Then inevitably the guilt sets in. I worry about the sick days I am taking – is this going to set me back in my career? I haven’t seen some of my friends in a while, how much longer would they be willing to try if I am always turning down invitations out? I’ve heard it time and time again, relax. Stress will only make things worse, especially when it is over things you may not be able to control.
So how do I move forward, balancing my health with my desire to live a big life?
I have decided to be unapologetically on “team me.”
I accept that I may not have the quality of life I would prefer, but I will do everything I can to make sure I have the energy and time to enjoy the life I have. I am the best advocate I have for myself, and the same goes for you. I have lots of goals, dreams, and plans for my life. It just might take me a bit longer, or I may have to find a unique route to get there.
I am continuing to make my big plans, but adding in caveats along the way, so there is an alternative if things do not go exactly how I want. I am moving closer to my family, so I have a tighter support network, to a town with a slightly slower pace. I have accepted I may need to alter career goals slightly, and have begun to look for opportunities that allow me to work from home when needed, while still in the field that interests me. Most importantly, I have learned that it is OK to let go of things that no longer serve who I am right now, because the me I was before I got sick is gone, and I am OK with that.
So be kind to yourself, and others. Realize that people may not ever understand what you are going through, and that’s OK. Surround yourself with those who do understand, or at least those that attempt to. Keep trying to challenge the limits you think exist, but do so softly and with kindness towards yourself if you hit a roadblock. Remember that there are a lot of us out here, especially online, who are in your corner.
I’m willing to change my team name, if the right people want to join.
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