When you have a chronic health problem like fibromyalgia and chronic fatigue syndrome, it doesn't take long to realize that other people are uncomfortable hearing about health-related issues. When your illness is a big part of your life, however, it's hard to avoid it entirely.
A recent comment left here really made me think about why health is such a taboo subject:
"I find as a disabled person that our own hero's journey is not at all respected because of the social prohibition about talking about health (unless, of course, other people are talking about the newest anti-oxidant or a supplement that has been shown in one poorly conducted study to bring down cholesterol). Other people can talk about how they are managing the challenges they face in their lives-work, spouses, teenagers, etc.-, but if we talk about our courageous attempts to survive and grow through illness, we are illness-focused, social pariah." ~eClair
I understand that no one wants to sit and listen to endless health complaints. When we need to vent, we need to find an appropriate person, place and time -- an online forum, a close friend, a family member who understands. In other social situations, I think we need to limit the amount we talk about health, but I don't think it should be off limits completely. Fibromyalgia is a big part of my life. It's changed who I am and how I live. If I avoid mentioning it at all, I feel like I'm being disingenuous.
But then, I also know that bringing it up -- even casually and with a bit of humor -- can create an awkward situation. When I started to think about why, I realized that I can no longer really see this from the other perspective, so I asked my healthy Facebook friends to tell me why they think this is such a tough topic socially. Here's some of what they said:
"I think people are uncomfortable discussing things they know very little about. People believe they can offer advice on all of the above things, except health. And, unlike a broken automobile, the subject of health has a certain risk factor in it. The average person knows very little and, sometimes, assumes the worst."
"I imagine there's perhaps a subconscious element of fear of mortality (even with non-deadly conditions). Diseases and chronic health problems - unlike relationships and money - are very real reminders how tenuous and transitory health, and by extension, life, is. It's scary to confront our own fragility (even when you're talking about something that isn't communicable)."
"I think people naiively assume that any health problems are brought on by the person who is ill - if you have lung cancer you must be a smoker - if you have heart issues you must be overweight - if you have a child with a birth defect it must be something the mother did during pregnancy - then there are the diseases like arthritis, migraine, fibromyalgia that healthy society doesn't necessarily understand and sometimes people assume are only 'in your head.'"
"When someone brings up such a problem to me, I feel very anxious and sad and helpless and worry for that person and when such a thing will hit me or someone I love."
"I think perhaps because we really don't know what to say, how to offer 'comfort,' and are afraid of saying the wrong thing....Most of us have jobs, kids, political views, etc so we feel like we 'know what we are talking about' in those areas whereas health issues just scare the hell out of us and leave us at a loss for the 'right' words."
What I try to do when bringing up a health issue is to touch on it briefly and then move on. Depending on what's appropriate, I'll either be very matter-of-fact or use humor (like I do with a lot of things.) For example, when my son's teacher asks if I can volunteer once a week, I decline by simply saying, "I have some chronic health issues that are unpredictable, so I really can't make that kind of commitment." I don't say it apologetically or weakly, I just state it as fact. I'll then try to move on quickly to something else, so the other person doesn't feel like he/she needs to respond and find those "right words."
What do you think is behind the awkwardness of talking about health? Do you try to avoid health issues? Have you found ways that you can work it in without it creating an uncomfortable situation? Leave your comments below!
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I think everything your healthy friends said about the topic is the truth. It’s very hard to discern what with health is under our control, and what isn’t, and that is very scary.
I have not found very many outlets at all where I feel that someone can really understand at all what I’m going through or talking about, except for my mother who is experiencing her own “world of the sick” as she is recovering from a severe stroke. I think only those who live in this world of doctors and tests and trial and error can really relate or hold up the conversation. Otherwise, a person knows not what else to say other than, “I’m sorry”….
Your Facebook friends are quite insightful. It’s very difficult to understand what anyone is going through in an illness. I think about my father in the last months of his terminal illness. I think of a neighbor with Parkinson’s. A close friend with severe arthritis. We don’t know what it’s like, and we don’t know how anything we say can help. But I do have a friend that frequently asks how I feel on a particular day, and I really appreciate that because she is acknowledging the seriousness of fibromyalgia.
Another comment on your blog is also perceptive. Life has meaning and meaninglessness, and it is uncomfortable to be reminded of debility and seeming hopelessness.
I think healthy people get nervous around us Fibro people bc we are so very different now, than the person they used to know…If they knew us when we were healthy that is.
They don’t know how to react to seeing the extreme difference in the way we look (I look like a skeleton), they get flustered and leave. Nobody visits me. Its another part of this I have learned to live with.
As far as new people in my life, they only know the Sick Me, so they are used to it already. I try to avoid the topic as long as possible, but when people ask me to make plans, I have to be honest – I can’t make any definite plans.
I live in a world of Maybe’s.
Maybe I can go to your party.
Maybe I can do this photoshoot.
Maybe I will get well one day.
Maybe I can clean my house today.
Not trying to sound like a pity-party, just being honest.
Its Life.
My experience with “healthy” people (normals) is that unless they have already heard of or been around people with immune system disorders, they do often assume that Lupus/MS/ME/CFS/FMS kinds of patients may have caused their illness or have just had “bad luck” visited upon them. This can be just as true in church environments as it can be in families, neighbors, work, or hobby environments as well. As a nation we are more understanding of substance abuse, financial problems, divorce, and addiction than we are of physical, psychological, or mental illness. In spite of Lyrica TV commercials, it’s really a matter of marketing and publicity, I’m afraid.
I don’t avoid talking about my health issues, but I am very careful about how much I do talk about them especially with those that don’t have a lot of health problems. The reason is because I know that it makes them uncomfortable, so I learn to gravitate toward those that have health problems like myself. Some of them do have fibro like I do in addition to other kinds of health problems.
I know that one time when my fibro was at its worst and I found it hard to function I did manage to get out and about, but told this one person that I needed to go and take a nap. This person that I told made a comment to me about how I would not be able to take a nap while at work (finding a job has been difficult and am still looking but of course the economic situation now adds to the problem). If that wasn’t bad enough though, was that she laughed when I said that I had to take a nap.
My point for bringing this up is I think that sometimes healthy people feel very akward being around someone who has health problems as they don’t have a lot in common.
I have also learned that sometimes with those that have health problems like me that sometimes I can’t talk to them about what’s on my mind. And the reason is because I think sometimes they feel awkward too in that they don’t want to be reminded on a regular basis about their problems. I guess they figure that if they don’t talk about it at all with others that share common illnesses that it makes it easier for them to forget that they have a problem which then eases the awkwardness that they may feel.
Last weekend I was so tired. I went to bed at 2:30 pm on Thursday and I was there for 72 hours. I slept probably all but about 5 hours of that time. I was suppose to go out with a friend and had to cancel. This friend actually asked me if I took too many pain pills.
I do talk about my FM but not all the time. Once I get to know someone I will mention I have it and if they want to hear more fine and if not thats fine too. FM and CFS is part of me so I think its fine to mention it to people.
I am too sick to leave the house much, so I seldom have an opportunity to talk about my illness. Three or four times a month I go to the store, and sometimes talk to the other shoppers but never about my illness unless they mention they have a chronic illness.
I try not to think about my illness. The first five years I was sick, I was consumed by the disease. I joined a bad forum, and was in a depressed state grieving for my old life.
I finally accepted the old me was dead, and if I ever did recover I would be a different person. I decided to be thankful for each day no matter what. If my eyes opened, it was something to be thankful for.
I’d like to say I started getting better from that day forth. But I can’t–I actually grew much worse for a few years before I started improving. Now I am able to cook one meal a day, help plan the garden and spend most of my days playing computer solitaire.
If you visit me, I will talk about my cute chihuahuas or my garden. I’m a lot happier since I stopped thinking about my illness and stoped comparing the me of now with what I used to be.
My focus in any conversation is the needs of the other person. I can’t do much to change my life, but maybe I can encourage someone else.
“My focus in any conversation is the needs of the other person. I can’t do much to change my life, but maybe I can encourage someone else.”
Leona, that is a great attitude. I haven’t guite gotten there yet but am moving in that direction.
I am a person who opens up my life, just all comes out, but not to the point of nausea for the listener! I do not feel bad about it because so many times we feel no one understands, so it feels like I am educating the public for the next guy. If someone I know asks sincerly how I am feeling, I tell them. When their eyes start to glaze over I joke and change the subject. If it sounds like a passing greeting or I don’t know them I say fine. If I am asked to join something or do something, I mention my illness and my ‘new’ unreliability (”you ought to try it!) or my ‘new’ take on laziness or wimpyness. I make sure they know what I am saying is true and the joke is sarcastic, but leave it at that. Most people are then glad to help or comfort even if they don’t want to hear the details.
Please don’t stay quiet about our illness, even if you don’t go into detail. If is feels safe, let’em have it!
That’s our story and we’re stickin’ to it!!!
I so love these articles and the comments others leave. They all are such life savers for me.
In past articles the topic of “How are you doing?”, comment has come up and there has been so many different comments about that and this too. Socially I suppose we just ask that question instead of how is the weather. I try to ask people what have they been up to instead. When I am asked it depends on who has asked and how I feel on the answer they will receive. That is the bottom line and truth. 
With this article, I think in general people do not really care how we are doing and when we do tell them it makes them wish they hadn’t asked. I have found that most people are “ME” focused and do not care much about anything else. They would rather talk about themself and do so with much pleasure. So think about it, when we tell them how badly we feel and what they really want to do is talk about their own self. LOL!!!! I do have to chuckle at that one because I have truly found this to be true. The minute I stop talking about me and ask about them and encourage it, it is like the sun has risen from the night fallen sky. LOL!!!! Okay, enough of my sarcastic remarks and giggles. But try it some time and I think you with agree. That is why I stated earlier it depends on who asks me how I will respond and why I have learned to say so what have you been up to, because they really want to talk about themselves. There was a time I had so many friends and never enough time to do things with them all. They would get frustrated with me because I had my calendar scheduled so far in advance with others to do things. But let me tell you that in the last 7 years my life has changed tremendously. And it is all because of the FMS & CFS. All these so called “friends” who always wanted me around are no longer calling to make plans and coming over to visit, etc. Now to not put it all on them I have to say I do not feel well most of the time and don’t want to do things, etc. and they just don’t have time to mess with someone who doesn’t want to do anything with them. It is unfortunate because those of us who are not feeling well and who are now disabled because of these illnesses are the same people, we are now just very limited and the “others” don’t want to deal with out limitations. I had a friend tell me the other day that I needed to find people to have in my life who appreciate me. There are a few that have kept in touch and I with them which is wonderful, and by God’s grace I have met others in this big world that do seem appreciative what life and what it has for them and others which is refreshing. So in ending I just think we live in a self centered society that wants everything to look and feel good and if it doesn’t then they put their blinders on and turn the other way so they don’t have to deal with something they do have to. I think God holds a special place in heaven for those who do take the time and help and love us through our illness though. Take care all and I send prayers that we all find peace and pain free lives soon. 
This is a hot topic! Adrienne, I think many of your Facebook friends are on target. I love Facebook and get encouragement if I mention I am in a flare. I try not to mention it often though (I have FM, CFS and OA and am waiting on disability). My true friends understand when I can’t think of words, you know, the simple ones! I used to manage millions of dollars and little words and names are elusive now. I am different, and I accept that, but some people can’t and even get mad that I do accept it. Like I’m giving up. Not at all! In fact, acceptance opens the door to say, “I can no longer to this, but I can do…” I make it a mission whenever I get groceries (a harrowing, all-day activity), to help as many people as I can and to make them smile. It makes me feel useful. I rarely tell my mother or sisters anything because they want to tune me out. It’s like they don’t believe I could change so much. I was about as low as a person gets when I discovered what worked for me to keep me going. People do not empathize, and they rarely come around me just to visit. I have quit trying to explain. I told my husband a year ago that it would be easier if I had cancer because at least people had some idea of its seriousness and implications. And there are at least some treatments and cures for cancer. Lyrica commercials trivialize fibromyalgia. It doesn’t explain my experience. Like Donna, I have spent the better part of three days asleep. Who would do that willingly? I have decided that it is I who will have to adjust and the others can understand or not. Since it’s genetic, they could have it themselves. I try not to let it get me down, but sometimes it really does. Yet I wouldn’t wish it on anyone. I do focus more on who I have and what I have, and that is so very much, and not the job I can no longer do, or the friends and family who have deserted me. Often I am actually grateful for these illnesses because without them, I would be busting my ass for a company that didn’t appreciate me 60-65 hours a week. I would have missed so much with my sons. I would not have found God like I did and Who is a constant in my life daily now, and my husband and I would not be as close as we are now. So as for why–I think some people are clueless, some are uncomfortable, some are self-centered, and some just don’t care and don’t know what life with fibro is like. When it gets me down, I file it under “Not My Problem” and go on. Just had to have major surgery on top of all the other stuff. And I continue to just say, “I’m fine” until I find someone who is really asking.
Health problems are just plain boring, mine and everyone else’s bunions are boring, and CFS/Fibro isn’t an exception to that. Other people can’t relate to what it is like to be so trapped, the minute-to-minute variability of this mess we are in.
I have recently developed severe POTS,dysautonomia, and I don’t even want to publicly introduce yet another weird ailment into the stew of me.
This article hit a lot of truths for me. My response and suggestion: Keep talking about disease, especially if you have an invisible disease. How else will the normies be able to gain an understanding?
I really do not talk about me being sick, and I am really good a hiding it, or at least I think I am. The thing that I am having a really hard time with just saying enough is enough, and I can not do this. My husband is really good, at telling me to stop and rest, and he tells other no she can not do this.
Now, I just need to learn to do that for myself. I still think that I should be able to do what I want, when I want.
Also most people do not have a clue about Fibro, or what to say, other than you need to talk to someone, because it is in your head.
I understand Leona in saying that she’s too sick to leave the house much. A lot of the time I’m just well enough to go out for necessities (groceries, doctor’s appointments, etc.), and if there’s any question about whether I will be well enough to do those things, then I nix the “optional” things, like having a social life or church or the like.
And when I am well enough to do the “optional” things, then there’s quite a range or responses to health-related conversations. Heck, my brother recently said that he’d noticed that I wasn’t using my automatic starter much so I mustn’t really need it (to warm up the car in the winter before I get in it). I told him it’s not because I don’t need it but because I’ve been under so much (brother-induced) stress that I keep forgetting and then don’t have time to let it warm up before getting in it.
I don’t necessarily like just talking about my health, but it sort of runs my life and so even answering the most innocent, unspecting question (e.g., “So what are you up to these days?”) makes it hard to avoid.
My nephews think I’m pretty boring compared to their other aunt. And, believe me, before fibromyalgia boring is about the last word anyone would use to describe me! I can’t blame them, though, my current life is pretty boring. But other than being boring, I know I really have a lot to be thankful for.
Great topic, lots of deep thinkers on this site.
A niece told me at Thanksgiving that FMS was a made up desease. Please pass the stuffing! I just let it go unless someone TRUELY wants to know. We are living in a me society.
Saw an article a D.O. from Ireland found that her Cordisol levels were way low. She is having a life now. Dont know if she went on adrenal support or hydrocordsone. I plan to call her tomarow[spellling] love you tommarow
Judy
The health topic is hot…but most times I just listen. To other people, you look just fine and most don’t understand. A lot of folks have never even heard of fibromyalgia, and trying to explain it is difficult at best.
I am trying to change jobs because of my health and I really feel that I was passed over on one interview because I was honest and said that I wanted the change because of health problems. I didn’t go any further than that. Now I have another interview and I don’t know what to say. I don’t want to lie.
Another reason I don’t talk about it is that I feel that most people don’t care anyway. Talk about a bad additude!
I have CFS and have been struggling with many difficulties. I went from being totally bedridden 2 years ago to working 3 hours on occasional days. Even though this is very difficult and I am exhausted by it I feel it is important for me to be taking baby steps to fight to regain my life back as much as I can. I too have learned who ‘really’ wants to know the answer to ‘How are you?’ My family and close friends have been very understanding. Unfortunately, not so with some of my co-workers making days at work very difficult now that I am back to work. I have found with some it was the unknown and not understanding what was happening to me. Education for them about CFS and how it has affected me has helped them. Like Kim I have learned to be grateful for the blessings of each day. Sometimes my joy comes from the people in my life, a gift from God in a sunset or hummingbird, or a snuggle with my dog. I have learned to accept where I am now, what my limits are, and try to stay positive about my future.
How are you Cheryl?
I corresponded with you before on Christian Cafe.
Hope that you are on the road to recovery.
In Christ,
Jules