Having fibromyalgia is horrible, but having to deal with unsympathetic people can be downright devastating. It can be challenging enough dealing with a condition that is painful and often invisible. Not having the support you need from those around you can make it even more difficult to cope with the challenges of living with fibromyalgia. However, I need to make sure that I don’t let others’ words or actions get to me. I have enough to deal with, and I don’t need negativity, or ignorance.
Here are five comments someone with fibromyalgia doesn’t need to hear:
- “You just don’t want to work.” Yes, you are correct. Why would I want to work? I would much rather stay in bed all day, lose everyone I care about, and jump through hoops in order to get disability benefits. I want to live on less money than I would if I were working. Isn’t that everyone’s dream?
Please think before you speak! I, as well as a many others, do work, and work hard. Unfortunately, there are quite a few of us who are less fortunate, and have a number of underlying illnesses that are debilitating. Fibromyalgia is recognized as a disabling illness, but getting approved for disability isn’t so easy. It can take years of fighting to get a favorable ruling. During that time, there is no money coming in. Do you honestly think anyone wants to live that way?
- “You look fine. You can’t be sick.” Thank you for that astute observation. You got me. I’ve been faking all along. Please don’t tell anyone else. I don’t want to give up using fibromyalgia as an excuse to get out of events I would love to go to, or to cancel on friends and family members at the last minute.
If you were to look deep into my eyes, you would see my pain. Do you ever get a headache? Can others tell you have one just by looking at you? Don’t assume that just because I look “fine” or “normal,” that I’m not suffering.
- “You need to work through the pain” or “You’ll be fine.” I had no idea you were a doctor, with a vast knowledge of fibromyalgia. Please tell me about the research you’ve done on fibromyalgia. Apparently, you know more than my physicians, and me, on this subject. Please enlighten me.
Unfortunately, if I work through the pain, it causes more pain. It’s true that movement helps fibromyalgia, however, if you are not physically able to do the activity in question, you will cause a flare. I can mostly manage light movements, for about 10 to 15 minutes at a time. I will not make myself sicker for you!
- “This is all in your head.” Really? It’s that simple? I guess someone forgot to tell my body that. Gee, I didn’t know you were a psychologist. Thank you for the insightful diagnosis.
If this is all in my head, please explain the diarrhea, muscle spasms, rashes and other physical symptoms that can be seen with the naked eye. No one wants this horrible illness. Don’t be so insulting! I may have fear that is “all in my head,” but my pain is very real. Don’t confuse my pain with fear.
- The absolute worst, and most offensive, comment I’ve ever heard came from someone very close to me. I was shocked, that in response to my mention of back pain, they said “Well, I have back pain, too, so I must have fibromyalgia.” Wow! I thought fibromyalgia was much more than that, but I was obviously mistaken.
Of course, they don’t suffer from this disorder simply because they have back pain. How do you respond to such a hurtful comment? I’ve gotten to the point where I try to ignore the ignorance, but on the inside I feel pain and anger. How can someone who claims to love you be so cruel?
I’m interested in hearing from readers regarding their experience dealing with rude or insensitive comments. How do you respond? Do you cut those people out of your life? Do you speak up for yourself, or let it slide?
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Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.
Great article! It really depends on the situation, relationship status and history. But ultimately its not our job to educate them and you can save a lot of energy just saying thanks for lunch, coffee, and end the date. Walk away and go enjoy something. If its a close friend or loved one who truly wants to know and it is coming from a place of respect I will be open with them and write down a list of sites to go to self-educate more. If it’s coming from a place of facetiousness then they get treatment above. It’s taken 40 years to define boundaries for myself, and as my chronic pain as become more complex fibromyalgia with OA, structural spine problems, and mixed connective tissue disease …. that its not worth explaining in most cases and in most cases nobody’s business. With that said def share from am advocacy standpoint just cut off vampires and those looking to demean you or deny your right to exist as you are. They are well disguised. Much love! Davina
I have experienced all of the above. Some of my family and friends don’t understand because they can’t see it. They think I like not feeling well enough to get out and do things. Maybe someday everyone will Fibromyalgia….
Meant to say: Maybe someday everyone will understand about Fibromyalgia and be kinder in their relationship with us.
I love how you handle it. I’m still floundering when it comes to dealing with it tactfully! I find I let my frustration get the better of me. There are people worth trying to convince, but others I need to either walk away from or let it just roll off my back. I appreciate your comment! Gentle Hugs!
Dear Carrie.People can be dismissive,and cruel with their comments about an illness that is so hard to understand. The hardest part for me is that I don’t understand, and I live with it!! I have had this Horriable,Debilitating,Illness for over 15 years,and i still cannot come to accept it as my reality. How can I expect others to? The fight never stops with this illness!! Exhausting!! Take care,and thank you
Cheryl, So true! I agree 100% with everything you said. It feels like we battle with every aspect of our lives and it is exhausting. But knowing I am not alone makes it a little easier. Thank you and best of luck to you!
I don’t care what others say. I never look to others for approval. I’ve had stupid ppl say things like that they know someone with fibro and once they got off their meds for it, they felt better. They describe such things like a magical cure and the person with fibro is ‘magically’ better. I don’t take meds for my fibro. I take lots of vitamins and use other natural sources to manage it. I am often in pain though and exhausted. My main problem is that when I begin to feel good again, I over do it.
I never let stupid ppl upset me though who are ignorant. They aren’t ppl that I want in my life anyways so their dumb comments mean nothing to me except that they are ignorant.
Charlene, I’m finally getting to that point myself. I told a few people in my life that I wasn’t going to let them get to me anymore. Tough to do but I have to if for my health. I’m like you, when I start to feel good, I over do it and the next thing you know, I’m right back to where I started. Thank you for your comment! Take care!
I have had Fibromyalgia for the past three years. I have looked after my granddaughter for the past 8 months. As she has gotten older bigger crawled now walking she is now 14 months old. I flared 4 months ago but the Christmas break saw me through. January I flared again but it was short lived. I flaredagain beginning of march, this has been a big one. Exhaustion and pain has really set in. Not to mention the headaches. The hurtful response from my daughter in law was… this is really hard on us for sitters and my boss is getting angry at me foraging time off. Looks at me with its all your fault look. Can’t you just get a pill from your Dr? Some people are so selfish they don’t even want to understand.
Linda,I’m sorry she was being so selfish. I used to keep my grandchildren I have 15 now. I would drive 1 hr round trip to pick them up,so mom could work,etc.. then things went haywire,some were adopted away,I was in the process of trying to adopt them,when I realized I just can’t. I did not have it in me,mentally or physically. The loss of my grandkids and the loss of my ability just about did me in. Fast forward 10 years, I spend time with my grandkids that have come since,but I do not babysit,I no longer change diapers,if a mess is made mom or dad is cleaning it up. My grandkids still think I am the best,I really don’t care what my so called adult children think, but I have gotten ugly remarks of…it being my fault that they had to adopt the kids away, why am I not as involved (free babysitting) as before, why can you do this,but not that. It took me 2 years to get past the emotional devastation of losing those babies,blaming myself etc… I decided that it is time for me,with what little bit I got left,I am spending it for myself and not feel the least bit of guilt. I raised my kids as a single mom. Partly raised 5 grand kids. They will fall as parents and they will pick themselves up. They will figure it out. What is the most important is your health,as women we don’t see this to be true.
As much as we want to help our kids,we can’t always. It sounds awful but I got to a point when my kids asked me to do things,I would think if I was dead and not here,WHAT,would THEY do.
My grandkids go to daycare,I will go and eat lunch w them,or go to school and have lunch w them. I cant pick them up,or cuddle much as I did before,i am an emergency contact. Don’t allow them to treat you this way,it is selfish and unfair.
Linda, I am so sorry you have to deal with that! How insensitive, selfish and rude!! It makes me angry! How some people can think so much of themselves and so little of others is beyond me. You need to take care of yourself first and IF, you have something left to give, you have to give wisely because that might be all you have for some time. Perhaps share this article with her. I’ve noticed some people respond better when they read it or hear it from someone else. Go figure! Why believe your mother-in-law or other loved one! I wish you the best of luck! Gentle hugs!
I think the one I heard most often was “That’s just a made-up illness that Dr’s use as a diagnosis when there’s really nothing wrong with you” Oh really? so thousands of medically qualified Drs, are committing a vast fraud on tens of thousands of people just for the fun of it?
The other one I heard a lot was “You’re neurotic: the pain is all in your head, and you’re too lazy.” I heard versions of this from the ex on a regular basis, when on 4 hours sleep per day, I travelled 50 miles to and from another city to work a night shift, get home, take care of my dog, figure out whether I had the energy to eat even if I could cook something. He was outraged when I could not then spend 2 -3 hours on the phone with his family, go grocery shopping, and clean the entire house from top to bottom, while attending various appointments in order for us not to lose our home. Bad enough that he didn’t accept that the mental health condition I was dealing with existed: he (and others) refused to accept that fibro is real, and even if it was, that it could possibly affect me so badly. I was already so ashamed and guilt-ridden at not being able to do a third of the things I always used to, that the constant drip feeding of bile made me feel like a failure, and I doubted my diagnosis. Thankfully, I found a great GP who helped me see that there was no way that I was making up the physical and mental symptoms I was suffering.
The one that gets me the most is when people want to know “why are you so tired?”. And then if I try to explain they will say that the reason I am tired and hurt is because I sleep too much. LOL
One of the comments that I have gotten really rubs me the wrong way. “Isn’t that just a catch all when they can’t find anything else wrong?”
No…it is no longer a “catch all” disease. There are very real symptoms that cause very real pain. And fatigue. And brain fog.
I am at a point where I can usually manage my pain and have found a good balance (for me) of what kinds of exercises and for how long. So yes…I do look fine. But my entire body both hurts and feels like restless leg syndrome. And I now have to make specific lists of things I need to do in order to actually remember to do it.
I was diagnosed with Fibromyalgia in the Medical of Virginia in 1967 —- after the German Measles at age 32! We moved to Florida, and it took 17 years to find a doctor who had even heard of it! As I age the pain seems to be more frequent (I am now 84) & I take aspirin when the pain is too severe. Other than that I have learned to live with it! Only my husband can tell when I am in pain.
Gloria
I read an article from USA Health about the latest research in Fibromyalgia. It says that Fibromyalgia is caused by excessive blood vessels in hands, legs and feet and other tennder points in the body, that is what I understood. I wonder if this source is reliable. I feel very happy about it.
I’m going through some very hurtful things at the moment, from people who I thought understood. My son thinks I’m making it all up, just so I can stay at home, live on benefits and isolate myself from the whole world. My hubby says that I should get more fresh air and constantly asks “Are you going to try and get up in the morning?” Even though he knows that I sometimes don’t get to sleep until 4 -5am!! Then he came out with a comment about being a servant when it came to cooking tea…..even though I don’t eat!! They have all forgotten the years that I ran around after them and didn’t complain once about it 🙁
Angela, I’m so sorry you are going through this! “They” say we end up hurting the ones we love the most and that is so true. So on the flip side, we are hurt the most by the ones we love the most. I don’t understand how people can be so blind and so unsympathetic to the ones who have always been there for them. Please, if you haven’t, join a support group online. Facebook has a number of wonderful, closed groups where you can vent, ask questions, get ideas etc. These are people just like you, who understand what you are going through, and will be there for you anytime you need them. I wish you the best and I pray that your husband and son get over their selfishness and begin to see that what they have been doing to you is unfair, mean and only makes your illness worse. Gentle hugs!!!