We talked here awhile ago about how hard it can be to answer the question, "How are you?" That's just one of many social situations that become awkward when you're living with fibromyalgia and chronic fatigue syndrome. I wanted to share with you a comment that Laurie made on that blog to start a conversation about another one of "those" questions. Laurie wrote:
"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!" ~Laurie
In today's society, we're largely defined by what we do for a living. Far too many people equate the worth of a paycheck with the worth of a human being. The first thing we need to do to keep that question from making us cringe is get past that way of thinking ourselves. Easier said than done, I know, but we need to start by seeing the value that we have as individuals -- apart from a job, our health, or how much we're able to do in a day.
You've probably heard this from me before, but it helps to have responses in mind so you don't have to come up with something off the top of your (probably foggy) head. Think about the question for a moment -- what do you do? Now craft an answer around that. Do you volunteer? Are you raising children? Do you have a hobby? Whatever you do, that's your answer.
I'm a firm believer that humor always helps. If you look uncomfortable or overly serious talking about something, it has a dampening effect on a conversation. However, if you give them a smile and say, "I see lots of doctors and otherwise enjoy a life of leisure," you've told them you're sick without being a big downer. The key is that you're comfortable with yourself and confident in what you're saying. If you're not really comfortable or confident, fake it.
This is a little different from my take on "How are you?" because the question is different. "How are you?" can come from anyone you encounter, from your best friend to a store clerk. Different levels of familiarity warrant different responses. On the other hand, "What do you do?" is usually a question that comes just after an introduction. These people don't need (or want) great insight into your life -- they're just making small talk until they either go mingle elsewhere or find common ground to form the basis of a real conversation. This one is always a surface question and it doesn't need more than a surface answer.
How does "What do you do?" make you feel? How do you respond, and how does it seem to work? Leave your comments below!
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Fortunately I’m able to hide behind school still, as I’m at least able to keep one class at a time towards my Masters. But the conversation continues to, “well what’s next? when do you finish? what kinds of jobs are out there for someone like you?” My take, obviously, is just to take things one day at a time, so that is usually what I tell people.
You are right though, letting go of your “identity” is a hard part of this illness, but also SO liberating! It is so much better not to be defined in a couple of sentences at a dinner party.
I’ve realized that over the last 4 years I’ve had to give up doing things that I wanted, but found that I always got just what I really needed. If you see each experience as a chance to learn and expand yourself, you won’t feel defeated or defined by your profession or lack there of.
I love the response, “I see lots of doctors and otherwise enjoy a life of leisure,”
Humour is so key!
Ugh. I hate that question. Fortunately, my husband and I have a small business so I can talk about that a bit, though I leave out how little I help most weeks/months. Though, I guess you could at least call be consultant on an almost daily basis as we do talk A LOT about things and I look up stuff.
But even after talking about all that stuff, or all the web projects I work(ed) on, I still get people asking again, “So, what do you do?” Ugh!!! I JUST TOLD YOU!!!
Or, they start offering suggestions on how I can work more — ESPECIALLY if they know I have FMS & CFIDS. Like, “Why don’t you tutor?” It’s like they can see right through me, and yet still completely fail to understand the restrictions of my condition, like not being able to tell someone “Yes, Monday night at 7 will be perfect.” I don’t know! My condition changes day to day and throughout the day, which is one reason why I really don’t like driving.
Again, ugh.
I say I’m retired, I used to work in Information systems/computers.
That is all they need to know. If they get to know me better than they will know the details later.
I can still talk a good game about computers, I just can’t physically or mentally do it.
If I’m having one of those brain fog days forget it I may just say I’m a refrigerator or something else nonsensicle and not realize what I said.
I used to say “not much” and then tell people I have ME/CFS. I guess now that I have a little part-time casual job doing phone surveys from home, it’s easier because I can say I work from home and if I want it to sound good I can say I’m a researcher!
But I will admit I have told some people I’m a “lady of leisure”. If they really want to know they will ask me what I mean. If they don’t it really doesn’t matter 
Another thing I sometimes day is “as little as possible” and usually laugh and I’ve just thought of another one – “not as much as I’d like to”! hehehe
sometimes i say, just trying to get healthy and stay sane. it’s about all i can manage at the moment.
I tell them I like to think of myself as a kept woman,my husband spoils me outragoulsy
I tell people I’m a slumber technician, disability paperwork processor, health-care utilization specialist, and all-around personal care coordinator for myself.
I used to try to justify myself to people for not working any longer. Now I just say “I don’t do a darn thing!” Which causes the person that asked me to start to justify my answer with “Of course you do a lot. You have two kids at home and your husband works out of state so you have to do everything he used to do…..” Then I just smile and agree.
I love this response and am using it next time:
“I see lots of doctors and otherwise enjoy a life of leisure.”
I am disabled with fibromyalgia, COPD, congestive heart failure, etc., etc. But I remain a priest with the Catholic Charismatic Church despite or maybe because of my disabities. So when I’m asked the “What do you do?” question, and I am not wearing a clergy shirt and collar, I respond that I am a priest.
If I am asked what parish, I explain I am a monk and mainly pray and do research.
That is all true, although to be strictly honest, I spend a lot of time resting.
I also don’t hesitate to tell people I have fatigue and chronic pain and that’s nothing to be ashamed of as St. Paul indicated in his writings he had an ailment which caused him to suffer constantly.
I especially love Sharon and Michelle’s responses, LOL!
I now can tell people I talk on the phone for 8 hours a day for a living- I work in a call center. I used to say, “I take care of my husband, home, 2 spoiled dogs and 2 huge cats when I am not playing grandma with my 6 grandchildren.” And it was totally true.
This question has never bothered me. I let them know that I am a Medical Secretary although not currently working right now.
It depends on what kind of people you want to answer to. Most of the time they don’t really care what you do (like “how are you?” is nothing more than hello.). WHat I recommend is to ask them ” Not much what I do but “What do YOU do??” You wouldn’t tell them what kind of disease you have.
I dont get asked this much but when I do I say I am a stay at home Yorkie mom and personal driver to my elderly parents.
Im 47 and have 2 adult children. Ive put in my time and now its me time.
At a conference dinner many years ago I heard a woman respond laughingly to that query with “as little as possible” . I have found since my illness, that it works extremely well in many situations. Keep it light and as many have commented already it is only a surface question.
Also it ensures that you don’t get depressed by having to be too detailed and frank with almost complete strangers in an already taxing social setting. BTW my first post and I’m loving this site. Thank you so much!!
This is all about how you feel about yourself. If your life is defined by your career/profession then you will have problems responding.
This is usually just a social conversation question and often the response is not even heard by the person who asked.
So it is pointless to get ‘hung up’ on this question as there should be far more to our lives than ‘what we do’. If that is a big issue in our life then we should be working on our self-esteem/self-confidence and not focusing on what we cannot do.
It depends on who is asking and how they ask. When someone asks me if I am a “housewife”…I say no, I am just unemployed. That usually stops them dead.
Now that I am on SS disability, I just say I am retired most of the time. If I say I am disabled I get the “look”, like how can you be disabled, you have all your limbs and can walk and talk. You all know the look.
If someone persists in knowing what I did before I retired, I usually just tell them I was a ICU nurse even though I went back to school and obtained a Master degree to get out of that stress filled, body destroying job.
I just try to avoid the conversation as much as possible. It depends on how much I feel like trying to educate the world about fibro.
I loved Debbie’s and Michelle’s comments and I am going to go through all of these and copy them down so that I am well rehearsed for the next rare outing.
Normally, I just say, “I’m retired,” and people, thinking that I am in my 40s (though I’m in my 50s), say, impressed, “Good for you!” (As if I’ve amassed the money to do this… I have not.) Or something like that.
When I get the sense that the person I am talking to is a bit stuck up, a social climber, I say, “I’m a retired attorney.” This is true (I started this career late in life), but when I was actually working as an attorney I avoided telling people I was an attorney in social situations (people are often overly impressed or take an instant disliking to you).
I do find the question: How are you? more difficult… even from people whom I think are really interested in my reply or at least pretend to be.
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.
I find that this hero’s journey is best discussed with other chronically ill people. Other people want nothing of it. Funny how we have to deny our authentic lives to sustain any social contact.
Well, it is important to educate others about fibro.That in itself can be difficult–people need to understand that it’s something systemic and not just a matter of some aches and pains. It also can be boring to hear about others’ illnesses, but it’s necessary to discuss your condition with those who know you well (without constantly complaining). What better way for people to understand than through someone they care about?
I still work part time, but it’s a challenge; and it’s important for people to understand how fibro limits one. As for a light social situation, unfortunately, I often feel out of place: others my age seem like giddy teenagers when I feel like a 90-year-old man (actually I know 90-year-olds who feel much better than I often do).
E-Claire’s comments were particularly striking. “How are you?” is the more difficult question. Yes, it’s a greeting really, not a question; but for those who know you well, it’s also intended as a serious inquiry.
E-Claire talks about the courage to “survive and grow through illness.” That’s quite a demand. I for one would not want to make the journey again in this universe.
Having this a chronic illness can really change your plans. I do find it difficult when people ask me what I am going to do next, meaning after I finish my current degree. At one time I had all these plans, but now I have to realize my limitations. How do you accept your limitations with fibromyalgia without losing sight of your dreams. It is hard, I still struggle with it, I am just trying not to stress myself out by looking to far ahead.
Twenty years ago, when I was only in my 30’s, I hated meeting new people because of this question.
I was able to depress a whole room by telling the truth. As time passed, I would say that I worked for doctors and lawyers and was a guinee pig for pharmaceutical companies. As more time passed, I would say that doctors and lawyers worked For Me, doing research. That shut them up…they must have thought I was important. My latest job is testing mattresses and couches. Why is this question so important to people? Now, I can say I took early retirement and I am thought to be a woman of independent means. That’s a joke in itself.
I’ve always hated being asked this as it used to make me feel so non-descript being “just” a stay at home mom; soon as that’s said, they’d walk away to talk with someone more “important”. Now that I’m older, t doesn’t bother me a whit, as FINALLY, I’m ok with myself and my self esteem isn’t threatened. It’s really sad, though, that some people think your self worth is from an education or job; makes me think now that maybe they have an insecurity……
This question doesn’t bother me anymore, so I like to say “I sleep around” when people ask what I do. A sense of humor can go a long way sometimes.
i work full time, so this is not a hard question to answer for me. the one that stumps me is “what do you do for fun?”. uhh, well: sleep, relax, listen to music… i don’t have any time or energy for hobbies, which makes me sound kind of dull! once i get through the day my fun is coming home and crawling under the covers!
My favorite comment is”As little as possible” I’m going to use that 1. I always feel awkward when asked the question and dread it. Some of the suggestions listed here by your readers are very helpful to me. I love the idea of using humor to answer the question.
My best friend and I just laugh at each other. She has rhematoid arthritis and Fibro. I have osteo arthritis and fibro. We laugh to keep from crying. We have all sorts of inside jokes, like most people will be trying to remember something and they say “it’s right on the tip of my tongue”. We say “it’s right on the tip of my toe” just takes longer. We have a picture of us cutting up and we both cant drink any more, so someone said to get up and let us take a picture, we looked absolutely stoned, but we were laughing out bones creaking. She nearly peed her pants. But I really enjoy being around someone that really knows. She’s sick, I take her soup, I’m sick she’ll bring me soup.
I think maybe some people ask the question becoz they are shy and it is an easy conversation opener for most people! That said I will avoid the response “I’m retired” as some will take that as an invite to find things they can get me to do for them!! So “as little as possible” is a good answer!!
Another response I am going to try out one of these days is “I’m a fraud investigator for the IRS, now what do YOU do??” – think this could prove very entertaining!!!!
I always say I’m currently unemployed due to health issues, and then change the subject to my hobbies and other interests. If they ask about my health, I’m upfront about it because there is always the chance they might be suffering too, and need some guidance. The first time I told someone I couldn’t work due to severe depression, she helped me through the whole process of obtaining disability and kept me from becoming homeless! If someone judges me for being “not sick enough” to be disabled, that says more about them than it does about me. If the person is dense enough to suggest I should be working, I simply say “I’m so glad you’ve been blessed with good health- I understand that it really is impossible to know how devastating an illness can be until you’ve lived through it.” If they continue to imply I’m lazy or “milking the system”, they are treated to a colorful string of salty expletives disparaging their character. And possibly their mother’s, too. Three strikes and you’re OUT!
I also hate this question because if you answer it honestly, then you get “oh I wish I could stay home all day just because I was tired”, or “you don’t look sick”. So, I rarely discuss what’s really going on unless it’s someone that already knows my story. I started volunteering, so then I would reply that I “do some work for XYZ business”. That usually would be enough and sort of made me feel like I had a purpose in life, which I DO!
I began scrapbooking and made three scrapbooks of my photography that I had done over the years. I had so many people tell me that I should enter my work in some gallery shows. I finally did abouot 4 years ago, and now I can call myself a Photographer! People actually do like my work and are willing to pay for it too, so I’ve been in the clouds with this!
When one door closes another one opens…………..
Thanks for asking.
When I had to leave my former profession and start school, I had a problem with this question, and then a friend said, “Tell them you’re on sabbatical.” It works great..people usually say, “Wow, thats cool. I wish I could do that.”
It depends on the person. If I know them to have a sense of humor, I say that with fibromyalgia, I am free to do anything I can. Heh, heh, heh.
If they are obnoxious, or trying to define me by employment, I get excruciatingly detailed and boring. Well first I wake up and feel pain. I carefully roll out of bed, stretching any spasmed muscles very careful so as not to injure myself. That usually takes about 30 minutes, instead of your 5 minutes. Then I sort and take my medications, which usually takes about an hour to do it all. Then I feed and medicate the dogs, and let them outside to pee. Then I feed the cats and clean the litter box wearing medical gloves. That whole process takes up the rest of the morning. My day doesn’t start until 9am because I am up until about 3 am the night before dealing with medications, animals, and pain creams. (Well, you get the picture….)
I am fortunate to have enough friends who are familiar with fibro that they don’t even ask. They know I am in pain all day & night.
I am retired … because I am only 56 they say they wish they could retire and then it starts off on another subject usually related to their work. If they ask how I was able to retire so young I might say it is related to my health.
I hate being asked “What do you do?”. If I just say I don’t work, they automatically jump to “Oh, how many kids do you have?”. Which I then say none and they end up looking at me oddly.
My sister suggested I tell them I am an artist and then I can be as ecentric as I want. Lol, I enjoy dabbling but am by no stretch an artist.
Mostly I just say I don’t, put up with the odd looks and never say why.
Personally, if a complete stranger has the impertinece to ask me why I am not working I would reply with something completly nonsensical, like I’m searching for the long lost treasure of the inca’s or dingoes ate my baby and I’m hunting them down or something similar. But said with a smile. That usually shuts them up and they realise it is none of their business why I work or don’t work.
Because frankly it isn’t.
I don’t think we should be struggling with what to tell complete strangers.
If they become more than strangers then you make the leap, but otherwise why are we sweating it?