Dealing with a chronic illness is never easy. There are ups and downs and more sorrow than you can imagine or that can possibly be explained. So here’s a blanket statement that might make it a tad easier for friends and family to deal with: It’s not about you.
I know this may seem rude, but it’s really not meant to be. It’s just something that should be kept in mind.
It’s not about you… when I’m anxious. Chances are I’m scared or nervous about an upcoming appointment. Each appointment is like a huge question mark about whether the doctor will help me, blow me off, or call me a liar. They are nerve-wracking and terrifying and I get anxious right before the appointment and unfortunately respond with grumpiness.
It’s not about you… when I’m quiet. Pain and exhaustion take up a lot of energy and attention. If I’m being quiet, it’s not because I’m mad or angry at you. Most of the time I’m just hurting. A lot.
It’s not about you… when I don’t want to share. I live with my illness 100% of the time, 24 hours a day, 7 days a week… etc. Sometimes I just want to escape it. Sometimes I want to pretend that the doctor appointments don’t happen. That the medical tests are not a reality. My not opening up and telling you all about it does not mean that I do not trust you or that I’d rather keep things from you. It might just mean that I want to keep it from myself for a little.
It’s not about you… when I cancel plans. Ok, this one may seem obvious, but I feel it needs re-stating. If I cancel plans, it’s not because I don’t want to see you or don’t want to hang out, but is instead probably due to the fact that I’m not feeling well. Some days I look and act perfectly normal so it’s hard to remember that I am sick.
It’s not about you… when I’m angry. Unless I tell you straight out that I’m angry at you, don’t assume I am. I watch every day as people do things that I should also be able to do. I feel weak, insecure, tired, pained, and half of the time I feel like I’m a failure. It makes me so angry to know that I could do so much more if I didn’t have to suffer with this. So I get angry when I see or think about things that others do so easily.
I have a chronic illness and I do the best I can in order to get by day to day. Most of the time all I ask from my family and friends is a little understanding.