I truly believe people want to help us feel better about our situation, but they just don't know how. I hate positivity about horrible situations. It's toxic and more harmful than just being honest and saying that does really suck. I don't think healthy people say these things to make us feel worse, but they do. If you have a chronically ill, or disabled person in your life, please do not say these things and I will explain why below.
It could be worse, or other people have it way worse than you do.
DO NOT SAY THIS. I cannot begin to tell you how many people have said this to me. Yes, some people do have it worse than me, but that doesn't mean my pain and suffering don't matter and isn't miserable and absolutely killing me on every level. This completely diminishes my pain and tells me you don't think I'm suffering enough and that my pain doesn't matter. It's not a competition. Pain and suffering is pain and suffering on every level. Nothing about this makes me feel better. It makes me feel angry and alone. It tells me I can't come to you to vent or to talk about my health.
But you don't look sick.
If I had a dollar every time I heard this, I'd be rich.
What is sick supposed to look like? Most of the time I'm glad I don't look the way I feel. I do my best to appear healthy and normal and the days I can't, I stay home and hide. Make up helps hide sickly looking skin color, dark under the eyes and helps me look perkier than I am. I'm not going to go out in public the days I can't make my face look decent, control my hair, or stop vomiting. Is that what people want to see? Would that make me "look sick"?
On the flip side, we also don't want to hear how terrible we look. We're aware, thanks. There's no need to comment on appearances for any reason.
I understand, I get tired too.
You don't understand. This isn't tired. We don't sleep and wake up feeling refreshed with energy. We have fatigue. We can sleep for 12 hours and wake up feeling exhausting. We are like an old phone battery. You can charge it as long as you like, but it never fully charges and loses power quickly. Studies show, it can take up to five times more energy for a person with a chronic illness to complete even a simple task than it does for a healthy person. Just existing is exhausting for us. I know it's hard to imagine, but everything takes so much energy that we just don't have.
Everything happens for a reason. There must be something positive to come out of this.
NO NO NO NO NO. This is such a toxic thing to say to someone. There is no positive to someone being miserable and sick every day of their life. It's not fair and it's awful. There is no golden reason or great thing to come from this. Bad things happen to good people and it sucks.
Just think positive and you'll feel better, or you just need to try harder.
If that honestly worked don't you think I'd have thought myself into great health, wealth, and an easy life? Just getting out of bed in the morning is me trying. Putting on clothes, doing my hair and make up is me trying. Existing is hard. The physical and mental side of being chronically ill is torture. If you see us out of bed, we're trying.
Have you tried...
Yes. Yoga didn't help. Magical supplements didn't help. Losing weight didn't help. Changing my diet didn't help. Thinking positive didn't help.
I'm doing everything and trying everything because that's what someone desperate for good health does. Don't make suggestions. We're aware it comes from a good place, but I promise we've already tried.
Pill shaming.
You are so fortunate to not have to take pills and chemicals and "poison". However, some of us can't function without them, or could even die. NEVER pill shame someone or comment on how much medication they have to take. If it was helping us and wasn't necessary, we wouldn't put up with the side effects.
It must be nice to stay home all day and relax.
Oh yes, trying to exist in all of this pain and nausea is a vacation. We actually spend our days at doctor appointments, emergency rooms, recovering from surgeries and procedures. Spending the day trying not to vomit is not fun. There's nothing relaxing about my day. I'd love to have energy and a job like everyone else. Being chronically ill is very isolating and stressful.
"The worst thing you can to someone with an illness is make them feel like they need to prove how sick they are."
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