Chronic illnesses like fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) can really set us apart socially. When we are able to be around other people, we're presented with some potentially awkward situations. One of the ones we're sure to face in just about any social setting is the dreaded question, "How are you?"
When someone asks me that question, my poor foggy brain has to quickly evaluate several things:
- How well do I know this person? (To determine the level of honesty & detail.)
- How sincere is the question? (Does this person know I'm sick & want an update, or is it just standard small talk?)
- How can I answer honestly & appropriately without making things awkward? (Healthy people don't want to hear about illness -- it makes them uncomfortable, and it can also make us look like whiners. On the other hand, I don't want to lie!)
That's a lot for my brain to deal with in short order, so I've come up with some prepared responses that work well for me. None of them is particularly profound, but they fulfill the social requirements of an answer that doesn't dwell on illness, without making me feel dishonest for saying, "I'm great!" I generally say these kinds of things:
- "Not too bad." (If that's true.)
- "Hanging in there."
- "I've been worse!"
- "Oh you know, just being me."
- "Enjoying life on the roller coaster."
With those answers, people who don't know (or care, or have forgotten) about my illness aren't confronted with it, I don't feel like a liar, and I don't give the false impression that everything's peachy. People who know me well enough to know about my health problems also know I have a sense of humor about it, so I can deliver one of my phrases with a half smile and they get it.
The less comfortable we are with our health problems the harder it is to answer these kinds of questions. I've been able to reach a place where my FMS (and its companions) are just a part of me and my life -- my name's Adrienne, I'm a mom, I'm short, my eyes are hazel, I have fibromyalgia. When I treat it casually (and sometimes with a bit of self-deprecating humor), it seems to help other people become comfortable with it.
However, I know it's a hard place to get, especially when illness is new to you or when you've had people around you question whether you're really sick. For that reason, when I'm talking socially to someone with a health problem, I don't ask, "How are you?" Instead, I'll say something like, "It's good to see you." If I do truly want to find out how they're doing, I'll be specific so they know I'm interested in their problem -- "Have you been feeling better?" or "Are you doing OK with _____?" It works with people going through other difficult times as well -- I recently was around the friend of a friend who'd just lost his wife. I saw several people greet him with a cheery, "Hey, how ya' doing?" and saw him pause and try not answer. When I said, "Hi, I'm glad you could make it," he looked really grateful.
How do you answer "How are you?" What goes through your mind when someone asks you that? What awkward experiences have you had? Do you have a standard way of answering? Leave your comment below!
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When asked “how are you?”
I alway reply immediately with
“how are YOU?” For those who are not interested, or have no idea i’m ill are not offended, it’s only the people who are genuinely interested who will press the point and ask again, or realise I’m trying my tactic and I often get “I asked first!”
I have a little game with myself, and see how many times I can get it to work – is that cruel???
Z
This still takes me a while to figure out but usually I find, like you said, saying “It’s good to see you” is the best way to handle that kind of greeting. But like you said as well, it all depends on the situation.
Most of the time I say “OK” or asks “What’s up?”.
Sometimes I describe my real situation, for better or for worse. However, I should mention that when it’s worse, many times I feel an uncomfortable feeling after I say that, because I do feel that people either don’t want to hear about it, or that it causes themto like me less, even if they don’t mean it and don’t even know about it.
But many times I feel that I want to express my feelings, so I tell people that I want to talk to them about it (even that as I said, many times I feel uncomfortable afterwards).
Unless it’s my doctor asking, I always say, “Creakin’ along – same as usual”.
“Not too bad” is probably the one I use the most. If I’m feeling a bit worse or struggling sometimes I’ll say “Surviving” or “Getting there”. Sometimes I even say “Good”:) Which usually means I’m doing ok in every other way than physical! But with people who know me and who I know are asking about how I am really doing I will be honest and try to explain. How you’re feeling physically when you have ME/CFS is such a difficult thing to explain to people who have never experienced anything like it! When I hear healthy people of my age saying they’re tired I wish I could know what that feels like!
“I’m hanging in there” is my usual reply because it’s the most honest one. I’ve been sick for so long that I don’t have to pretend to be okay. Of course, only another person with CFS or fibromyalgia could possibly understand what I’ve been through these past 25 years, but when I give my “standard reply”, it gets a quick sympathetic nod without our having to discuss the issue further, and that’s all I need. The last thing I need is advice like “get out and exercise”, blah blah blah. So, I’d rather not discuss the details of my illness with them, but I don’t want to be totally dishonest with them and myself and answer the question with “I’m fine”.
I hope you’re all “hangin’ in there”!
wow this article certainly hit the nail on the head as they say.
i give much the same answers as you.Near the beginning of my illness i would wonder ,do they mean compared to an average day of mine or a normal persons?.
“How are you?” is a social greeting, like saying “hi.” You are exchanging pleasantries at a party and people want to be happy; it isn’t really an inquiry into how one another is doing. I think social propriety (and being good company!) is to answer with cheer and humor, despite how you may actually be physically feeling. I like to find a positive response, no matter how small, something like, “Great! Today I finished ____ book I’ve been reading. What is new with you?” This tactic has also made me feel better about what is good in my life, since I’m not such a conversation killer.
I agree with the other comments. If it is a close friend that is inquiring about your health, the question will be more direct.
I am so glad you brought this up! I have found it very awkward when asked but then once I say whatever I forget about how it has turned into an ongoing problem since getting sick with FM! Now that you mention it though…it surely has been!
What an excellent topic to have addressed here! My responses have varied but good to hear how others are handling this awkward question for people who have been ill or really not doing that wonderful!
For people who know, I may say “How many hours have you got?” – then if they really want to know, they will pursue it. If it was just a casual enquiry, they just laugh & carry on with what they really wanted to talk about. It means the choice is theirs, as a lot of people don’t want to hear about it every time we speak.
I found that it is best to respond in terms of how everything *else* is fairing — like pretending I don’t have fibromyalgia. For people who know and understand, it is often clear that they mean to include the pain and sleep problems.
With strangers, it is pointless. Who wants to stand there and give people a lecture on chronic pain and invisible disabilities every other day? Plus I already get enough grief from people who simply don’t understand that the severity or visibility of a disability has no direct relation to their ability to work.
A paraplegic can work. A person who is going through Chemo *may* be able to work. But somebody with the kind of pain and sleep issues I have can’t really work a normal career. I went from making quite a lot of money each year as an experienced software engineer with a master’s degree while pecking away at my PhD requirements.
Now I can’t work. The pain became so bad I began to dissociate while sitting at a workstation writing code for 8-10 hours. The pain was so bad I often could not concentrate sufficiently to perform my tasks which were rather complex problems and involved a lot of integration between real-time embedded systems and cutting edge user interfaces.
It became really difficult to justify why I had to take sick days and vacation days about two times per week or why I often could not get to work in the morning like everybody else. If I didn’t have to work with a team of engineers, it would be a little easier since I just work my time later into the evening and break up the time I spend working. But even with that, the pain would not simply go away. Nor could I take more powerful pain killers because of their effect on cognition and attention.
I honestly dread those conversations when I have to explain this disease to somebody.
Also, it is extremely difficult for a man to have this. In some ways, the prejudice and stereotyping against women helps people to just accept they have this problem. But our society in general cannot accept that men have these kinds of problems.
Daniel’s comment about not being able to work is so familiar. I was also working in Information Technology and before I was diagnosed, I didn’t know how to handle remarks and questions about how I could forget small things — and large things. I felt like a complete idiot. Sadly, after I was diagnosed, I still got the questions and the looks (the ’she is really dumb’ looks) but I found I couldn’t use fibro to explain since either no one knew what it was or, if they knew, they didn’t believe that it caused brain fog.
I was finally forced into an early retirement. I now work at the library off and on and find it easier in some ways. I live with my son and he is very understanding so that helps a lot.
This comment has taken me a while since today is a bad day which means my typing is horrible — my backspace key is getting a workout!
I couldn’t imagine being male and having fibro. Hang in there, Daniel — and all of the other guys. Some day fibro will be viewed as a real disease — for both women and men — I fervently hope.
And to get back to the original question, I’ve found (being a Yankee) that here in South Carolina, it’s Hello (or Hey) — How are you — and then on into their question or conversation. I usually just answer ‘Fine — how are you?’. If it’s someone who really wants to know, they’ll ask for clarification.
First off, thank you Daniel — as a fellow guy (on disability because of fibro) you expressed very well some of the daily struggles and frustrations (bigotry) a man with fibro experiences.
As for how I respond to the question, “How are you?” I keep it simple and typically reply, “OK.”
Why? Partly because, as already mentioned, it’s really just a social greeting and not really a question. But the primarily reason is, I’ve typically just finished traveling in a car (as a passenger), and I’m usually in a lot of pain and have a bad case of fibro-fog. The phrase is simply easy for me to recall — after some practice — and right then I’m usually just interested in finding a quiet corner to sit and recover anyway. *smile*
Whenever I am asked: “How are you?” It use to really get to me until I finally learned that each and every day that I am able to wake up and experience all things around me is nothing but a true blessing, so now I answer that questions with: “I am Blessed, How are You?”
And now I feel so much better when that question comes flying in my direction! Give it a try and see if you don’t feel better too.
~Be Blessed~
Marla
I few months after being finally diagnosed with fibro a friend sent me an email and asked me, “Are you better yet?” “In response I told him that I would never be “better” but that I was doing better than before.
Sometimes when people ask me how I am I look them in the eye and say, “Better than I deserve.” You can imagine the responses I get. Or, sometimes I soften it to, “Better than I was.” Then, there is, “Not as good as you.”
A psychologist gave me a great piece of advice when he told me to “fake it” because nobody is interested in really knowing how I am and they expect me to be as healthy as I look.
I’ve really enjoyed these comments, as much as the post itself.
I typically also use “hanging in there.” Sometimes I wonder if I acted positively by saying “Great!” would my body respond by feeling better? Sort of “the law of attraction” in action? Or would that just perpetuate the battle we all have to fight against those who don’t believe our pain is “real”?
I don’t know the answer and I’m too chicken to try it out.
Sherrie, I really liked your question/response. Does the body feel better from the positive verbal response?
For me, it has been the same as Maria (#14). When I give an answer that focuses on the good parts in my life, it actually helps remind me that there’s a lot good going on. I feel happier and can better focus on the positive in the long term as a general outlook.
Yes, I often still will feel ill after the party, and rest the next several days. But I feel more patient doing so, and not being as stressed about it, knowing that I will go out again and enjoy life makes the same amount of sickness not feel as bad.
___________
Just to add to the discussion on gender and disability: Women who are ill fulfill the worst sexist stereotypes: dependent, frail, at times incompetent. As a woman and disabled, and functioning in a professional capacity, I do not think that that our illness is accepted, but that the dismissal of us can happen for two reasons, not just one.
(Not saying the experience is any easier than for men out there. Just different.)
Imagine what it is like for a seemingly healthy man to stand before a judge to argue his is permanently disabled and deserves the service-connected disability the VA has owed him for two or more years in which he has lived in poverty and will soon face homelessness. I am dependent too. But I don’t have anybody. When I became disabled, my wife left because she said she didn’t want to be married to a man who is sick.
Things are VERY different for us.
Zarla,
This is a great idea. Now if I can only remember to actually do it. I have had problems with this for quite
awhile.
Daniel,
Everything you describe in your post (18) happens to both men and women. The denial of disability claims and the loss of relationships is not unique to either gender.
Please don’t take offense at my post. I wasn’t dismissing your experience, just adding another perspective. I think we both agree that the experience of disability is complicated by sexism, but that it is experienced in different ways by both men and women. That is all my original post said.
I’m sorry things are so difficult for you right now. I hope they improve.
My grandmother had a saying when asked how she was that I employ often…she would say “I’m fair to middling”. Most people get the humor in the remark and I don’t feel that I have to fake it with”I’m fine” or if it is a truly bad day, get into any explaining. For the 10+ years that I’ve had fibro, my sense of humor some days is all that keeps me sane!
I answer “I’m alive… That’s better than the other option, I guess”
i’m in pretty good shape for the shape I’m in
When someone asks me how I will say now doing good and that’s because I am doing good. When my fibro was acting so much I would say, “I am hanging in there”. When they would ask my mom about this as far as about me she will say “she has her good days and her bad days”.
Great topic. I have pondered this many times in the past. It’s really hard to know if people want honesty or not, and usually NOT I am thinking.
I have probably used “all of the above” responses during my 40+ years of dealing with illness, except for “I am blessed – How are You?”. I will try to use that one, if I can remember to, and especially if it’s a bad day, because we are always blessed in some way, and usually in many ways. They may still get a hint becaue it is not a standard answer.
If it’s a relative or friend on the phone, I might say, “Well, I got up and I got dressed.”
I’ve sometimes had a person respond with the same thing like “I’m hanging in there too” and then I wonder if they have an illness or some other trouble that I don’t know about, or if they are mocking me. I would ask, but it hasn’t been an appropriate time for a long conversation when that has happened.
Anyway, it’s great to know I’m not alone in ponderng this, and “I am blessed” to have this internet, and a conversation with people who understand.
Carol
I went today for Pre admitting testing since I am having surgery on Tuesday. Of course they never have a question about Fibro on the list of questions. So when asked if I had some type of autoimmune or Lupus I said no. Then when the nurse looked over the questions she again asked all the questions there. I told her that I had Fibro and she put it down. She said that now its listed as an autoimmune. I was surprised. I laughed and said oh its not all in my head any more. She said no its listed as an autoimmune. Great. I was so happy to hear that. I know that the last time I had this type of surgery on the other arm (rotator cuff repair on the left arm now this is the right arm) they did keep all my limbs together and I didnt suffer from a flair after the surgery. I was also given some extra pain medication above and below the surgery site. Which helped a lot. So maybe we are finally getting some action like we needed.
Guide Response: While it’s great that it’s listed in a medical capacity, there’s actually no evidence that fibromyalgia is autoimmune — we don’t have any known autoantibodies, inflammatory markers, or degeneration. ~Adrienne
I’ve been told at work by the director (a library – I am one of 2 assistant directors) that I should smile more because people are afraid of me and affected by my moods. How do I smile more when I’m in pain all the time. This seems really insensitive to me.
If they say how are you, I try to answer regarding other things in life… pets, children, home… since I refuse to have sickness define me. If they specifically ask how are you FEELING, to my close friends, I say “I’m doing well for me” if I am having a good day. To people that are not close, my husband says most people really do not want to know details and don’t understand details, so I say I am doing a little better and keep it short. If it is someone who understands chronic illness, they usually like to have all the details and updates.
I heard someone answer “I am.” While we’re discussing this topic, let me propose an even more dreaded question & ask what people answer. That question is, “So, what do you do?” This question can really cause anxiety and hit hard on your self-esteem. Even my husband once said “all the other wives work” & that having a lower household income due to my illness was stressful for him. I’ve found that having a pre-rehearsed answer stated with confidence makes me more comfortable instead of trying out impromptu answers.
Thanks for all your comments. I have always hated the ?
“How are you”. It has always seemed shallow to me. I still feel uncomfortable. It’s always followed by, you look great!!
I would just like them to jump inside my body even for 10 minutes to know how I am. But like the rest of you, I’ll reply,”Hanging in there!” or “Counting my Blessings!!”
Wishing you all a stressless Christmas.
Maggie
Thanks so much for this question and the suggestions. Sometimes it is just good and comforting to hear how different ‘myalgiamites’ deal with an everyday situation.
This is a good topic of discussion as we face this all the time. Several years ago during a particularly busy summer of lots of family visiting here at the beach, one of my young grand daughters asked me why I never smiled anymore. It really hit home about how much our efforts to get through hard
times, shows all over us. I began then to try to remember that when I am focused on my pain, it affects all who are around me. It takes an effort to smile but it is reassuring to others. Now I will say I am hurting today or this is a good or bad day. And I don’t always wait to be asked — it
helps those around me too. They know I hate the question about “how are you” or “what’s the matter”
so we get it out front. They cannot read my mind.
And it helps others (especially those precious grand children) understand that my clenched jaw, tight lipped frownie face isn’t aimed at them…….
I hope this helps you, Diane, and others too.
To Jennifer #29 – How do we start a new question?? The “What do YOU do” question plagues my self-esteem so badly. I WAS a nurse and am able to do some volunteer work now as I get a better day. But I hate social situations because of the Fibro -I arrange my whole day around an occasion, finally get myself together, get there, try to smile and then have to play verbal tennis while avoiding questions. Sometimes it’s just not worth it!
I normally say’ “I’m upright today, that’s always good.”
My grandmother who had CFS for the last 40 years of her life would say, when asked how she felt, “About like usual.” She never said “fine.” Now as a CFS patient I understand the honesty of her response.
wow! the age old question,
I like ‘my glass is half full’ (not half empty)
life is good and on days when i struggle I try my very best to smile and stand up straight and say’ I’m getting there slowly.’
I enjoyed all your responses as I do not know anyone nearby who has fibro-cf-diabeties-chronic back pain-endemetriosis- ibs the list goes on who could answer you after hearing all that?
It is much nicer to be positive or like a comedian, they are accepted if they make fun of things no one wants to hear dreary things all day I dont!
so lets just do our best and we can share these sorts of things with each other
have a great Christmas I will have a rest and try to accomplish something each day!!
thanks for your thoughts
Jennifer
I agree that the right response to the question “how are you?” depends upon the person asking as well as the situation. But I heard a terrific response to the comment “you look great!” the other day. It was “That’s the look I’m going for!”
A therapist suggested, “Can one ever really know?” and then moving on while the person is struggling to make sense of your response.
My answer: “Okay enough” delivered with a smile. If they know me they’ll ask more, if not, that’s sufficient.
I, too, struggled with the “What Do You Do?” question. Even as I know we’re human beings, not human doings, it still affected my self-esteem. And I finally found peace with two answers. One is “I volunteer.” I do a lot of different volunteer work, advocating for fibro, rescuing Yorkies & Silkies, for example, so that’s not an untruth. I also will say “I’m a mental health therapist” even though I don’t work in the field other than the FM/CFS/ME support groups I run. My training is as a therapist, it is ingrained in every fiber of my being, so it is who I am, whether I’m being paid for it or not, just as I’m sure it is for the nurse who posted earlier. I’ll finish the sentence with “but I’m not able to work in the field due to my fibromyalgia.” That can be a conversation ender, but it can also be an opportunity for me to educate someone about fibro. Often I’ll be asked, “oh, I’ve heard about that but don’t know much about it”, which gives me a chance to tell them a little about FM.
And for the poster who talked about FM being autoimmune, I would have pointed out to the nurse that FM is a central nervous system disorder which is why some rheumatologists (who deal with autoimmune problems) have stopped treating it. Too bad neurologists don’t want to start treating it.
Like you, I have used several responses, depending on the situation and/or person.
If I don’t know the person well or if I guess they don’t care to hear details, I sometimes say “Hi” – especially if there isn’t enough time to talk (like passing in the halls) or “How are YOU?”
If the person knows I’ve got Fibromyalgia, I sometimes say “Just as great as yesterday!” which is a bit tongue-in-cheek. Sometimes people catch on, sometimes they don’t. Other times I might enthusiastically say “I’m fantastic!” and if they catch on and say that sounds suspicious, I tell them I just wanted to try it out and say that, for once.
For those who know me better than to ask, I usually say “shitty” if I’m not up to any shenanigans.
I have CFS, and my response also depends on how well I know the person. I usually say “hangin’ in there and you?” to people who are just being polite. When people ask “so, what do you do?”, I like to say “Oh, I sleep around”, which is the truth!! A sense of humor can go a long way sometimes.
I’ll try to make this brief. Regarding the claim from Magnesium Direct, I’ve debated whether to post this because they’ve been very apologetic, but I don’t want someone else to wind up like me.
Two weeks into the treatment (exactly according to the protocol) I developed an excruciating pain in my abdomen. My doc sent me to the hospital for blood work and cat scans, fearing appendix or gall bladder problems. $6,000 and no results later, and after being told of the mag treatments, he concluded it was gas buildup, and the pain slowly fizzled after stopping them.
Nothing was said in their ad about this side effect, but my doc said it was a “duh” (ever heard of Milk of Magnesia?).
I can’t work and have no insurance due to FMS, and this leaves me in a very bad situation. Don’t let it happen to you.
gtarmike