Editor’s note: In this series, Crohn’s Disease Health, Mary Horsley writes about mental and physical health in relation to IBD, and how unreliable it can be. In the first of three columns, she focuses on the fickle and unpredictable nature of Crohn’s disease.
It’s more than frustrating when your head and heart want to get going and do something, see friends and be social, but your body won’t let you because of illness.
It’s more than frustrating to make and break plans, and it is never fun missing out. Trust that we, chronic illness warriors, want to keep our plans with you, but it is not always in our bodies’ best interests.
Everyone I know with a chronic illness, like myself, struggles with making plans for fear of having to cancel them and let others down. Sometimes, we can’t avoid it. Sometimes, we have to give in and listen to our bodies, because no one knows it better than ourselves. Sometimes, we can get left out or left behind. We get avoided because of the flakiness of our illness, and invitations come less and less often.
We fear being seen as the unreliable one, and we know the impact this can have on maintaining friendships, employment and relationships. Each can be affected by our illnesses.
Illnesses can be unpredictable, no blame should be placed on those who are suffering. Those who are fighting illnesses are fighting for health, and being unreliable is unavoidable.
Eventually, we all make plans that end up getting changed. And that’s okay.
On good days, we can function seemingly well. On slow days, we barely get by. And on bad days, not at all. These days, when nothing gets done, are the worst for me.
Yes, I am unreliable because of my illness.
I often cannot maintain my schedule or keep the plans I make. I reschedule or cancel enough that my close friends and family know that I may not make it to events, and that my plans can change at the last minute.
The aches and pains we live with daily, they can change and affect us in so many ways. Some days, I hurt in my bowels; other days, my hands or my joints suffer. And on even more days I experience skin issues, fatigue and depression.
I have anxiety and I worry. I stress about making plans and later breaking them. I stress about accidents or more issues added to my list of things ailing me. Some days, I can’t even leave my house because of my Crohn’s.
While everyone else moves on with their lives, we are stuck. Sometimes, we need to be somewhere familiar, like staying home to handle ourselves or suffer more comfortably. I’d much rather have no pains than stay in pajamas at home.
Our day-to-day plans can change suddenly. While one moment seems to be fine, the next can lead to canceled appointments or added appointments, like ER visits and checkups.
For myself, certain things can make my illness worse, like stress, or insomnia and the fatigue that follows, or just overdoing it and wearing myself thin. I might have a few decent days, but then I find myself later having to take days to recover. I don’t want to flake or bail on plans, but knowing your body and illness and when to take the time for yourself is vital for even just a little relief.
But this unpredictability doesn’t mean we want to be battling on our own. Invite us to events. Text us your well wishes and hopes for better days. Take a moment to ask how we are or how we are feeling. Sure, we may not come to your event, and we may reply later than anticipated. But any concern for our well-being shows you care about our health, fickle or not.
With each ailment, it takes a toll on your body and mental health, too. The next two columns will focus on that, the mental health and physical health aspects of chronic illness, and how Crohn’s disease can affect life in different ways.