Chronic pain and disease are not just pain or sickness.
It is frustration, sadness, anger, anxiety, emptiness, and loneliness. It is wondering how on earth you will make it through, and if you can cope with this forever. It is wondering how you can pay the bills, buy your medications, and visit the doctors, while still putting food on the table for your family. It is missing your life, the one you had before you got this sick and being scared of the future.
Surviving with chronic pain, or illness means that each morning when you get up (if you can get up) you face the day with uncertainty and fear. You try to put a smile on your face and cope the best you can, but often failing.
Those of us who have this battle withstand so much mockery and blame from others, there is so much misunderstanding and incorrect information out there that we are often confused as bludgers and slackers. It hurts us, it hurts so much.
So please, no matter how well meaning you are, don’t say…
01. But you don’t look sick.
Ummm, thank you. I guess? But just because I don’t look sick doesn’t mean I am not. When you say this, it isn’t a compliment, it is an invalidation of my illness. I am already discriminated against by my own body, by well people (for being “lazy”), and by disabled people (for not being in a wheelchair) so when my friends tell me I look too good to be sick, it really hurts.
02. Everyone gets tired!
Sure they do, but the difference between tired, and being chronically fatigued because of illness is that no amount of sleep makes me feel less tired! I am tired in my soul, it is in my bones and muscles, my body feels as though it is made from quick set cement on a warm summers day. This isn’t tired, this is hell!
03. You’re getting fat/you look good slim.
I can’t control what my weight does, it goes up and down depending on the disease activity, the medications, or any number of other factors that are often outside my control. Please don’t comment on my weight gain and praise me when I get thinner, all this does is give me worse self esteem issues than I already have.
04. You are just having a bad day, chin up!
A bad day can be improved, it is something a person can get over and move on from. Please understand, I would love to move on from this. Sometimes it might seem that I’ve improved, and I cherish those times – but the sad fact is I can’t be fixed to suit myself or anyone else.
05. I wish I didn’t have to go to work either.
I wish I could work. Being a single income family is hard, I feel constantly guilty that I don’t contribute financially to our household. When the bills are piling up and my husband is looking tense and tired, I know that my health or lack of it, is part of the puzzle. It hurts! And while our double income friends go on holidays, out to dinner, and buy that new TV, we scrape to put food on the table, and have a TV with a blue screen – so yes, work sucks, but so does being poor.
06. It must be nice to be able to sleep and sit around all day.
Yes, it would be nice to do those things out of choice. But they aren’t anywhere near as much fun when you are doing them because your body says “NO” to any and all activity. Chronically ill people generally still must do their own housework too, instead of it taking us 30 minutes, and being able to sit down a relax though, it takes all day to get one job done. So there is a lot of time spent immobile, but it is rarely relaxing.
07. If you’d just get out more you’d feel better.
I get out heaps! Between all the doctors appointments, hospital admissions, trips to the pharmacy, and visits to the physio, it feels like I’m actually never home! But let us refer to the previous point about work, poor people don’t “get out” – we can’t afford to!
08. You should exercise more, then you’d feel better.
OH MY GOODNESS! Please, stop! Tying my shoes feels like running a marathon, and the last time I ran 20 meters I nearly fainted, so please do tell me more about how all your ills were cured by Crossfit, Zumba, or Yoga.
09. You should try (insert new fad diet or vitamin)
Thanks so much. Could you write a letter to my doctor with 30 odd years of rare disease specialty and let him know you have the cure to all ailments? If it exists, I’ve tried it! When you’ve paid $500 for a tub of vitamins from a compound chemist that did absolutely nothing except make you gag, then chances are you were desperate enough to do and eat almost anything. It is great that Kale cured your friends, cousins, uncles, brothers, step-fathers, sisters cancer, but I don’t hold much hope of it working for me. But I’m cynical like that.
10. It can’t be that bad, I know someone with (insert name of disease) and they are perfectly fine.
Good for them. Good for you. Good for everyone else who is “perfectly fine”, it is great to hear that others are doing well. I wish it was that way for me too, but sadly it is not. So yes, it is that bad, but I am thankful your friend is going better.
11. It’s all in your head, if you stopped complaining about it, you’ll get better. Be positive!
Positivity is not the cure for chronic illnesses. Being realistic about your diagnosis and honest about how you are feeling is not being negative. It is important to be realistic about our limitations, to do anything else is a disservice to our bodies and our family and friends, thinking positively helps me to survive, but it does not heal me.
12. Try to look on the bright side, there are plenty of others who have it worse than you.
Yes indeed, but the thing is, I am not them, and they are not me. We have all heard the line about looking around and seeing that there are others who have it worse, but trauma, including physical trauma, is relative. One person stubs a toe and falls over in a dead faint, while most would keep walking after saying a few choice words, each person experiences pain, and illness differently.
13. You just need to tough it out!
I am toughing it out, if I wasn’t, I would have given in to the seductive thoughts of suicide that often occur when I am at my worst. Imagine living a life of chronic sickness and pain, knowing you won’t feel better, and that the medications designed to help you, often make you feel worse – now do you see how tough I am?
14. You must love all the attention!
What attention? After you’ve been unwell for so long, you don’t have many friends to give you attention, and you fast learn not to introduce your chronic illness to new acquaintances, because they will run for their lives if you do. Chronic illness is very lonely.
15. This too shall pass, it will get better.
I appreciate your sentiments, really, I do. I know you are trying to be encouraging, but you aren’t. This won’t pass, it won’t get better. Some days it will be manageable, some days it might even be okay, but the good days don’t last, the bad days don’t pass. Chronic means long term, it means it is going to stay here probably for my whole life, so please don’t tell me that it will get better, just tell me that you care.
I appreciate that you mean well when you say the above things, but maybe the insight will help you to understand that they are often hurtful. I have been sick for so long that maybe I should be used to it by now, but the thing with chronic illnesses is that they don’t get easier to deal with, they just get more exhausting.