To the Friend I Keep Turning Down, From Your Friend With Chronic Illness
Dear Friend,
I just need you to know a few things. First of all, it means the world to me that you ask me to hang out. Second, I feel awful when I tell you I can’t. We aren’t that close, or maybe we are, but I’m pretty private about what’s going on with my body because I don’t want to be annoying by constantly talking about my illness. This means you may know some things about what’s wrong with me, you may or may not know my diagnosis, but either way, when I tell you I can’t hang out, it’s usually accompanied by a lie. It’s usually harmless (at least I think it is); it’s usually something along the lines of “I have too much homework” or “I’m going to see my parents.” Maybe you know that I’m lying, I don’t really know, but most of what I’m saying translates to “I do not have the energy to do anything today” or “I’ve worked all week and I have no homework but I really just want to spend the weekend doing absolutely nothing so I’m ready for next week.”
I wish I could make you understand why things like going shopping or even just going to
lunch are so hard. Sometimes you know that these things make me tired, so you offer to just hang out at your or my place, watching movies or baking. But those days are hard, too. They’re fun, they really are, and I thoroughly enjoy our time together. But being out of my house is exhausting; simply existing is tiring for me. Standing and walking is exhausting, and interacting with people (yes, even friends I’ve known for a long time) can be exhausting. You know those days that we spend shopping? I often go home and sleep the rest of the day, and spend the next day resting to make sure my body is OK. I don’t know why it’s so hard to do these things; I wish it wasn’t. I wish I could do the fun things we
used to do.
The best explanation I can give you is that my body doesn’t work right, and literally everything I do takes more energy than it does for most people. I could go into details, but I don’t know if that’d help much. (Example: Standing, moving, talking, eating or anything that involves movement is tiring because I have to consciously hold my joints in place, and that’s tiring for my body and mind because I have to constantly be thinking about what I’m doing). I just want to apologize for lying to you, and to tell you this: Please don’t stop asking me.
Please don’t think I say no because I’m too busy or don’t like you. Eventually I will say yes, or I will even ask you to go out with me. I’m sorry it’s always on my time. Well, it’s not my time; it’s my illness’s time. It decides everything for me now, and trust me, I hate it and wish this wasn’t the case, but right now there’s nothing I can do. Please believe me when I say that. I’ve done everything my doctors and I know to do, and I really miss the way my life used to be before this sickness took it over.
Sincerely,
Your secretly chronically ill friend
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Alexandra is a wife and nurse dealing with Ehlers-Danlos syndrome (a connective tissue disorder that affects every body system and causes chronic pain) and its comorbidities (postural orthostatic tachycardia syndrome, migraines, irritable bowel syndrome, mast cell/allergy issues, sensory processing issues, adrenaline dumping/panic disorder, and general dysautonomia). She loves her husband and three golden retrievers more than anything and still tries to do the hobbies she can, when she can (photography, horseback riding, painting, singing and playing violin and piano).
alexandra-kaye