I think it’s probably difficult for people around us to know what to say when we tell them we’re suffering. Before I suffered with headache and neck pain, I probably said a few of the wrong (well-meaning-but-annoying) things myself.
I am selective about who I share my pain with. Sometimes, I feel like I’m being boring if I talk about my health. Sometimes, I worry that people will think I’m whining. And an annoying comment can really get to me when I’m not feeling at my strongest.
Generally, I just grit my teeth – and remind myself that ignorance was bliss – when I hear any of the following;
I don’t appreciate it when someone remarks that because I’m smiling and happy, that I’m ‘better’. Being happy is something that I work at in spite of having a headache or a neck pain. It doesn’t mean that the pain has magically disappeared, it just means either that I’m having one of my better days, I’m coping better or that – through the miracle of make-up! – I look pretty good today. I hate feeling that I need to be and look miserable in order to ‘prove’ that I’m “ill”!!
It gets me down when it’s suggested that if I took my mind off the pain / got out and did something else / “took myself out of myself” (wtf?), I’d feel better. It’s true that my social life has taken a bit of a nose-dive since The Headache began, but one thing I have learnt is that I need to do what’s right for me – if I feel like being sociable, I’ll be sociable – if I don’t, it’ll only wind up making me feel more isolated and unhappy than if I had been alone.
Some people seem very confident that based on maybe one or two words describing my condition, they are sure of what I “need” – perhaps the magic cure that their aunt’s cat’s previous owner’s sister used that’s bound to work for me! I certainly don’t mind discussing treatments that I could look in to – it’s wonderful to know that someone else has suffered with something similar and found something that helped – as long as I feel that they have taken at least a little time to listen to what’s actually happening to me first.
I would advise anyone in pain to do their own research, to connect with others in pain and to learn about what works for them. But in the first instance, whenever I come across a friend in pain in future, I’ll do what I appreciate most – to simply accept that sometimes we aren’t supposed to speak to “fix the situation” for them, to recognize with that person that the situation is horrible and to let them know that it’s ok to be sad / mad about it.
Pain is lonely, and when you have someone who can just be with you, who can just be understanding, who can even have a laugh at the situation along with you, it’s worth all the gold in the world.
What would you say? And what do you most appreciate hearing?
Pain Positive 
i think the pain is bad enough, but what has hit us as a family is how my daughter’s pain brings so much of what we used to do together to a halt. pain disables; it dismantles, literally. we’re placed in a position of making small steps (very, very small steps at that) back towards ‘normality’. trouble is, i think this is the new normal, and the pain-free past that we knew and took for granted, has gone.
I really needed to read this today, THANK YOU! I have MS and pain is a daily reality for me. It wears me down emotionally and has really been getting the best of me lately. I couldn’t figure out why I felt so irritable every time a friend asked how I’m doing. Then I read your post and it clicked….I’m just so damn tired of being sick and having my illness be the topic of every conversation! I’m more than a diagnosis and I won’t wallow in sorrow over being sick just because others think that’s how I should feel. Keeping a positive attitude is always best! Thank you!!!
This is all so true. Great post. I’ve gone through the same things. People, especially doctors, say that I ‘look’ ok so I must be ok. Or it must not be ‘that bad’. I think that people have such a hard time seeing something that is hidden. I don’t like to whine either. So I just talk openly. I don’t complain and say I’m crummy or anything, if someone delves into how I’m REALLY doing, I say, today is a good day, or I’m working on it and I leave it at that. There’s not much that someone could really say to me that would necessarily make things better. I think it’s more in action and understanding, when I say no I can’t go out, just understanding that I’m not having a good day. But also not handling me with kid gloves and never asking me to do things because they fear I’m ‘broken’. It’s really about taking things day by day and not making someone feel abandoned or inhuman or annoying because they have something they have no control over.
Many seem to think I can do,do,do and go,go,go because I am up off my heating pad but what they don’t realize is that just because I am making dinner or washing dishes doesn’t mean I am not in pain. I am in pain all the time, sometimes its mild, sometimes its unbearable. I do my best to not express my pain to my husband because he can’t bear the fact of not being to do anything to help me. I do vent to my best friend though because she is also a chronic pain sufferer ( tethered cord, chiari, and a tumor on her spine ) so we think its Ok to “whine” to each other. It really is a good idea to be able to find people who are experiencing the same things so you can vent, “whine”, or even share the good days :). When I do express my pain to other people sometimes they seem like they don’t care, they say “oh” or “that sucks”. But really, maybe they do care it’s just they don’t know what to say.
Reblogged this on Life of Dealing with Chronic Pain.
Thank you for this. I’m a tad new to the whole pain thing. I’m still discovering if I can get it into remission or not, but I’ve already dealt with some of this. For me, I appreciate when some acknowledges that it’s there, but still treats me normally. Of course, right now I can’t even walk, so I’m not super normal, but still.
I’m wondering how to explain it to people. I’m on crutches so I get a lot of strangers asking what happened to me. I’m rather athletic and have CRPS stemming from an injury. How do I tell them: “I am going to be on crutches for a long time because of the pain I’m in.” That’s not a great conversation starter. I’ve been trying to come up with a joke to keep the mood light, but I’m stuck. Maybe, “I think crutches are so fun that I’m going to keep using them for a few months.” Somehow that doesn’t sound right. Any suggestions?
If I could spend my day in a sauna or a hot bath, I’d probably do alright. lol It’s not a bad idea. Maybe I should invent a portable sauna/hot bath/electric blanket. I do know how to sew and to make things stylish. I’ll get back to you on that one, when I feel up to it…..
I’m five years into the acute phase of my illness. First it started with a diagnosis of Lupus, then I’ve collected Fibromyalgia, Rheumatoid Arthritis, Migraines, Reynaud’s phenomena, asthma, and a few other lovely little things that come along with those diseases. Basically, I’m allergic to myself. Autoimmune is the term.
Short answer: It bloody hurts.
I was a workaholic. So going from that to almost a standstill was hard enough. But I’ve managed to come to terms with it and even embrace the slowing down of my life. Amazing what you see when you slow down. :)
My family has not really accepted my conditions. They still think I will get better. They live two states away and don’t really spend day-to-day with me. They do #3 and #4 quite a bit.
I will say this: My husband is wonderful. Absolutely, beautifully, wonderful. He doesn’t make any of those mistakes. His sense of humor has helped me tremendously. I hope all of you have that in your life.
Thanks for the blog. :)
I am searching for the right words for 6 years and still every moment is lost in my desire to fix the situation at least part of it. For the least some of the pain is avoidable and that frustrates me.
I know that I am a bad husband to suggest to fix it and not being the sensitive and humorous type. I don’t know what to say.
It is hard to be on the other side too.
My dad is in a lot of pain. He hasn’t wanted visitors but now my mom says two people can visit for half an hour and that is all he can handle. I came here to know what to say. I learned a lot. There are probably things I would have said wrong had I not read the post and comments. I will remember what I have learned here. Thank you so much for “turning your pain into something positive” by writing this much needed post for me!