Chronic illness is exhausting: physically, emotionally, mentally, and socially. My body requires a significant amount of care and attention; it is truly a full-time job. Every activity in my regular life requires careful planning and preparation, before, during, and after it occurs. Special occasions bring a completely different set of challenges. Let me give you an example.
Recently, I was invited to go on a road trip with a few of my friends and some of their friends. Immediately, my anxiety kicked in and my mind started to race with all the things that could go wrong if I went on the trip. What if I have a fibromyalgia flare-up? Or a panic attack? Or an IBS attack? Even if those things don’t happen, the very thought that they might at any given moment is stressful enough in day-to-day life. Being on a road trip would make it that much harder to properly take care of any of those occurrences.
Next, my mind switched to: What will you do about food preparation? I have too many food restrictions
to be able to eat at restaurants these days, so I always prepare my own food and eat at home. This requires careful groundwork and extra planning. I can prepare my food ahead of time and transport it in an ice chest, but then I have to make sure there is a proper place to heat my food and/or that the places I go allow me to bring my own food with me.
Then, I started to worry: “What if I use all of my energy planning and preparing for the trip that I would have too much fatigue to enjoy my time, or even have to cancel plans at the last minute? Even worse, what if the fatigue comes suddenly and severely enough in the middle of my trip, to the point where I can no longer participate?”
All of these thoughts created so much anxiety, all I could do at the time being was send a text message, thanking my friends for the invitation and letting them know I’d consider it. These are people that I
love and care about, but who I haven’t seen in quite a while. They were aware that I had some health struggles, but not of the specifics or magnitude. After all, on the exterior, I appear to be totally healthy.
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After I sent the message, shame came over my whole body. While I am making progress accepting my health conditions as part of my life, most of the time I still find myself afraid to open up and authentically explain my restrictions and subsequent concerns. What if my friends reject me? What if I am left out of the group because there’s an activity I can’t participate in? Will all of the preparation beforehand, the
sacrifices during, and the time spent recovering afterwards be worth the possibility of a great weekend with friends?
I did my best to dismiss the shame, with breathing techniques and positive mantras I’ve learned in therapy. These things didn’t all the way dismiss my shame at the time, but they did help it to decrease.
Finally, during these moments following the road trip invitation, the grief set in. I haven’t always
been chronically ill; I had a healthy childhood and took so many things for granted, like eating whatever food I wanted, having sufficient energy, and maintaining a functioning immune system, for example.
I am working every day to remember that I am not my body or any less of a person just because my
abilities have changed; however, the grief over my diminished health and current capabilities persists. So does my anxiety about accepting social invitations, or explaining why I can’t go. In these dark moments, I breathe, and breathe again. This is definitely a one-day-at-a-time journey, or one-minute-at-a-time, depending on the day. Breathing… breathing.