I’ve seen some friends with chronic illnesses sharing how isolating it can be, how even family and friends don’t understand, get angry because they aren’t able to participate like others think they should, think they are too negative or looking for attention.
I wanted to share my truth, hopefully clear up some misconceptions.
If I tell you I’m just not up for doing something, I’m not snubbing you, I didn’t sleep the night before because I was up and down all night changing positions, trying to get comfortable, struggling to find sleep through the pain.
If I tell you I can’t meet you early in the morning, I’m not trying to get you to change your plans, or get things my way, it’s because getting out of bed, getting dressed and toileting are painful and difficult. These tasks require adaptations and a little more time. I’m tired from not sleeping and the pain is often worse first thing in the morning.
If you plan something or want me to meet you someplace and I tell you I can’t it’s not because I don’t want to spend time with you, it’s likely because of the distance I would have to walk, steps I would have to climb, lack of easy access to a restroom (on ground level), length of car ride to get there, etc.
If I’m in a sour mood, emotional, quick to anger, it likely has nothing to do with you, and everything to do with my pain level, the frustration my pain causes me when I can’t do the things I would like to. Chronic pain takes a lot of energy, mentally and physically, to cope with. It makes everything more difficult and draining.
If I’m forgetful, can’t remember something we just talked about, interrupt you when you’re talking, or repeat the same things over and over, it’s not because I don’t think you or what you are saying is important or that what I’m thinking or saying is more important, it’s because I have brain fog from the pain, the medications, depression. It’s hard to focus because I’m thinking steps ahead of myself, preparing for how I’ll do something, or I simply can’t remember.
If I talk about the pain, how I’m feeling, it’s not because I’m looking for attention, it’s because I want you to understand why I’m not able to do something, or not reacting as you’d expect. I’m worried about how my situation will inconvenience other people.
If I have a relatively good day and I try to accomplish as much as I can, it’s not because I have no pain or am faking otherwise, it’s because I don’t know when I’ll feel up to it again and try to take advantage of the opportunity. I know I’ll pay for it for days afterwards, but I’m trying desperately to hold on to some sense of purpose, contribution, accomplishment.
I push myself because I’m terrified of losing what mobility and ability I currently have. I’m afraid of the pain keeping me from “living,” only existing, being a burden on those I love. Please don’t tell me if I were only more positive, if I didn’t think or talk about the pain or diagnoses, if I’d get up and move more, I’d feel better, be able to do more. That’s not true, it’s dismissive. That’s more about your discomfort hearing about what I’m dealing with than it is about what would or wouldn’t help me.
We never know what others are dealing with, we don’t know what they might be struggling with, or going through. Be kind, keep your opinions to yourself. Instead of making diagnoses or suggesting treatment for something you don’t understand, instead of making it about you and how my illness inconveniences you, try to be patient, empathetic, show a little compassion. I don’t want your pity, that’s worse than being dismissive, I just want your understanding.
I hope this helps someone understand a person in their life who may be suffering with a chronic illness.