MY LIFE: 22 things I wish healthy people understood

It’s beyond frustrating dealing with people who don’t understand our chronic illness conditions, and I’ve listed several here. Basically, I want healthy people to read this to hopefully open their eyes, and I want chronic illness warriors to know they’re not alone.

1. Why I sometimes don’t take meds for pain. If I did this, I’d be popping pills like Pez, and as any chronic illness warrior knows, you can’t do that. The reasons are myriad and varied, but you can’t. Sometimes we have to live with our pain, and sometimes meds don’t help. Also, with the current opiate epidemic, it’s hard for us to get painkillers, so we hoard them.
2. To dovetail on #1, I’m always in pain. Always. I’ve learned to live with it, so you might not notice, but yes, I’m in pain. ALL. THE. TIME.
3. I am not lazy. I have low energy and need manage it. That means that I may do absolutely nothing in a day besides stumble between the bed, the bathroom, and the fridge. If I could do more, I would. And yes, I feel guilty that I can’t do more.
4. And to dovetail on the end of #3, I constantly feel guilty. We all have long “to-do” lists, but if we’re smart about managing our conditions, we know sometimes we’ll get nothing done, sometimes a little, seldom a lot. We feel guilty because our illness affects others around us, and we’re powerless to do anything about it.
5. That sometimes I don’t want to talk about my condition. It’s nice to talk to people about things other than my fibromyalgia and related illnesses. Sometimes, yes, I do need to talk/vent about it, but I’d rather hear about something I don’t eat, sleep (ha!), and breathe every day.
6. I am not the person I want to be, and that’s really hard on me. I want to be productive like I used to be. I want to have pain-free days when I can frolic with my husband and daughter and not worry that I’ll pay for it. I want to go where I please, when I please. And most of all, I want to be a person who doesn’t have a chronic illness. And, if I react to you in anger or another negative way, remember that it’s likely the pain talking.
7. I am not faking it. I have a chronic illness. It gives me a lot of pain and crushing fatigue. I realize a lot of people don’t believe me, and that makes me angry, but there’s little I can do to change someone’s mind.
8. There’s a difference between happy and healthy. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.
9. I can’t do the same things today that I could yesterday, or vice versa. Some days I can stand for a while, others I can’t even sit for a short time. It’s difficult to know how I’ll feel on any given day, so making plans is a crapshoot. I don’t like being unreliable. It’s merely my reality. Please repeat the above, substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on … it applies to everything. That’s what chronic pain does to you.
10. I am trying to manage my illness, but it will never, ever “get better”, and hearing those words constantly is frustrating beyond measure. Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don’t you know that I would?
11. My mind is not what it used to be. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid. We might drift off while you’re talking, which makes you feel like we don’t care. We do, but brain fog is insidious and we do the best we can.
12. Pain and fatigue can make what seems like a small task to you a huge mountain for me. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like showering or doing the dishes, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK.
13. I may shy away from going to particular places, but I have my reasons. I may not want to go anywhere that has no refuge (e.g.no place to sit or lie down). I might not go somewhere that’s loud and bright. It’s all self-preservation, not me trying to inconvenience you.
14. I appreciate even small acts of kindness. Bringing me food, washing my hair, taking care of my child so I can rest…all of these things are truly appreciated, even if I do occasionally forget to say thank you. It’s nice to know I’m not in this alone, that you support me, in whatever way you are willing to.
15. I love hearing that you believe me. So many people don’t. And when those people are close to you, it hurts. So if you tell me or show me you believe I am suffering, it means the world to me.
16. I may need time to recover from something you don’t think is a big deal, or a lot of time to recover from a major event. Going to my daughter’s gymnastics meets exhaust me, and make me very sore since the places to sit are atrocious if they’re even available. Attending a party might do me in, well before the end of the night. Just making dinner or cleaning the house might necessitate a nap. It’s just the way it is. When something as simple as sitting the wrong way or standing up takes effort, nearly everything becomes a labor or a chore that I have to deal with and overcome, then rest from.
17. I wear pajamas and other comfort clothes a lot. Why? Because if no one is going to see me anyway, why shouldn’t I at least be comfortable? I’ve got enough to deal with and don’t need to add unnecessary chores.
18. I micromanage every single aspect and moment of every day. I have to, or I’m unable to determine what I can and can’t do and figure out how to get things done. This in itself is exhausting, but absolutely necessary. I’m not being a control freak because it’s fun.
19. I don’t invite people to my house because it’s always messy and I feel bad about that. But that doesn’t mean if you offer to come over I’ll refuse. It’s embarrassing when people come over and judge my cleaning skills.
20. I may not answer texts or phone calls. Sometimes I just can’t. I’m too tired to type or talk. I might not want others to know how bad I’m feeling. I might not want to have to say no if you make a request of me, so I avoid communication. Texting is always better than talking on the phone, though. I text instead of calling because I’m not sure how I’ll sound over the phone, and I can make the text sound positive without acting.
21. I may stay inside/at home for days at a time. I’m resting. I need to do it. Please don’t make me feel bad about it or lazy. Yes, it’s a beautiful day. Yes, I’d love to take a walk and enjoy the sunshine, but sometimes I just can’t. I keep a lot of my curtains closed. Bright lights and repetitive noises can be agony to me.
22. Family or friend gatherings might not be fun for me. I’m surrounded by people and kids are running around and everyone is talking, laughing, and having a good time. No one realizes how huge that sensory overload is for me or how much energy even sitting there can sap.

I could go on, but I won’t. Feel free to comment on what you wish people understood.