Social Media’s Reaction to Lady Gaga’s Fibromyalgia Announcement

Social Media’s Reaction to Lady Gaga’s Fibromyalgia Announcement
finding balance You probably have heard that Lady Gaga has fibromyalgia. If you are on social media, I don’t know how you could have missed it. My first thought was how wonderful that someone with her level of fame is speaking about this illness. Now maybe we can get some validation and bring some legitimacy to a misunderstood, misdiagnosed, and mistreated illness. I also perused the comments sections under the articles. Bad idea! I thought I had heard it all when it comes to the misconceptions regarding FM. I soon realized that wasn’t the case at all.  People lose their filters when they comment on social media. The anonymity makes it easier for people to say whatever they want without thinking or caring about the consequences. It isn’t as intimidating as saying it to a person’s face. It is a cowardly way to go, but sadly, it is becoming the norm. Here are a few samples of the ignorant comments I found: “It isn’t Fibromyalgia. It is an acute case of an adult seeking attention.” “When emotional pain is not acknowledged or tackled, it will oft times express itself through the body and in the form of physical pain and symptoms. Fibromyalgia is a classic example of this.” “It's called depression and hypochondria.
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  1. Chris says:

    This is the kind of thing that made it hard for me to accept my diagnosis and keeps me quiet about it. On the one hand, I want to be open about it to help people learn about it and understand it (and help me learn about it). But on the other hand, one idiotic comment from someone can throw me into a tailspin. I think what has the biggest impact on me is when a sister warrior fighting another kind of illness says something completely unexpected about Fibromyalgia. One thing said to me recently was “you know Fibromyalgia is not an illness, right?” Whether intended or not, it was like saying Fibro does not rise to the level of her illness and therefore is not a legitimate concern.

    Thank you Carrie for writing article. Morgan Freeman has been my Fibro hero since I got my diagnosis and learned that he has FM. And it has baffled me how people have criticized him and called his diagnosis into question. It really does affect us all differently. I would like to see more famous people talk about their struggles, whether it be FM, Lyme’s Disease, mental illness, etc., to try to bring these issues into the mainstream and make it easier for people like me to talk about it.

    • Natércia Magalhães says:

      Ignorant people can shut you up with their shouts and stupid attituds. There’s nothing we can do about that. Yesterday, a friend of mine called me on the phone and noticed my voice seemmed so tired and ill, and he came home to visit me and see how I was. I’ve been feelling very tired, sleeppy and aching all the time for several months in a row. He was surprised to see that, apparently, physically, I was looking fine, I was smiling, glad to see him. Only listening to my voice he could understand something was very wrong with me. It’s hard for people to accept it. I suffer from FM for 20 years and it was not from partying, not from doing drugs, not for excesses, not for calling for attention… I always was a very independent person, even when a child. People just don’t care. And this is the true. THEY DON’T CARE!!! I don’t wish to get too old and get to suffer even more. I’ve been talking to my 21 year old daughter about euthanasia when it comes to unbearable, and she understands me so well, because she has been living my pain everyday. She and her 16 year old brother know. They matter. The rest is just landscape. I wish all you warriors the best for every raising sunny day and every quiet and smooth night. A hug for someone who understands and cares. <3

      • Gabriel Giroux says:

        It is difficult to talk about FM to people who need to know. I went to my doctor’s office to discuss how I was feeling in order to increase my medication. As soon as I said to the doctor that I was always in pain, she said and I quote “You don’t look like you’re in pain!” People, in general, ought to have compassion toward others with chronic illnesses but it is expected that doctors be more empathetic than one’s neighbours, family and friends. Be as well as you can be.

      • Janice says:

        Natercia: Euthanasia is NOT the answer to fibromyalgia. I am not comparing myself to you, nor am I judging you, just please bear with me and listen.

        I’m now closer to 70 than 60! I also have FM, I live alone, no kids, no family, no one to call on to help, so I’m it. I go to bed worried that if I die that night, but that who ever finds me, that is when I’m found, will find me unshowered and dirty clothing, because I don’t have the energy to keep myself looking and feeling like a human every day.
        Getting FM has been the best thing that has ever happened to me because it made me smarten up and realize that every minute, every second of life is precious. There are days I can barely get through and good days. The good days are now far fewer.

        God has given me this opportunity to do some self searching and searching for spiritual depth and meaning. You deny your children one second of being with you, you deny them the rest of their lives wondering why they had to go through a parent committing suicide.
        I have been suicidal in the past from physical, emotional pain and I can tell you that nothing but good will come from the challenges and crosses that are given to us in this life.

        Please don’t think that killing yourself is the answer to your problems. If you think the pain you are experiencing now constitutes euthanizing yourself, imagine the many Christians who are being crucified, literally crucified or beheaded in the Middle East. Isn’t your pain tolerable when you think of what they are going through?
        Don’t get sucked in by this culture of death believing that you could have a Hollywood ending. Many assisted suicides are botched and leave the person far, far, far worse than before they attempted this suicide.
        You are depressed. Focus on your diet, each good simple clean food, drink clean non-toxic water, research medical marijuana or homeopathy for pain (arnica is excellent at night for pain). Anti-depressants may not be the answer as they can exacerbate the effects of depression. Try natural approaches. It isn’t easy, so take baby steps. Change your life with whatever little energy you can afford.

        I’m sorry to sound so angry, but you have wonderful children to live for. Seven years ago my little companion dog died. He is what kept me going each day and I didn’t have the physical energy or strength to now take care of him. I was so broken I was a mess, because I was exhausted. I had to answer the door for the letter carrier, one day, and I broke down. He came over to hug me and I was so embarrassed since I hadn’t showered in days. When he hugged me, I realized he was the first person I had actually touched in a year.
        What was the good of a horrific experience with euthanizing my dog? I ultimately went back to Church after 40 years.
        If you are not religious, then remember what Oprah used to tell her audiences – keep a journal and make a gratitude list each day. If you are religious, then offer up your sufferings for your children’s welfare or for others suffering.
        I pray every night and go through my list of everything that happened that day (eg even to have done the dishes, or brushed my teeth) and I thank God for helping me do that. The more often you do this, I can guarantee you’ll end each day with a lighter heart and mind. I guarantee it.
        Remember, you are never alone because God is with you.
        God bless you.

  2. Michelle Drake says:

    That is unbelievable that people are stupid enough to say those type of things. If only people would ask questions instead of staring at you blankly when you tell them you have fibromyalgia. A lot of my friends and family in law still have no clue what it’s like because they have never asked me anything. If I really loved somebody I would want to know what they are going through. Hopefully this will bring more awareness for us all

    • Nisey says:

      I have had fibromyalgia for nearly 30 years and it has been a life of hell. My MRI shows brain atrophy due to all the pain I have suffered. If that is not real enough then nothing is. The medical community still blew me off when they couldn’t diagnose me with anything. I have fibromyalgia – hello. It is so exasperating. I generally don’t tell anyone and if I do I say I have inactive Epstein Bar virus (which I do, the titers show I had it, but I didn’t know) and my immune system went haywire. Most people have IQ’s of less than 70 and are incapable of understanding anything, is my experience.

    • Helen Nuschler says:

      Michele and my fellow fibro folks.

      The problem isn’t that “people are stupid” or “have no clue.” The problem is that most of the medical profession refuses to believe that this illness, this defect in our central nervous systems is REAL.

      As an MD (with fibro since age 19) I read peer review medical journals. There is STILL conflict on whether Fibro is “just” a psychiatric disorder. The thing is if Fibro is truly a psych disorder it is STILL a severe debilitating illness. Ask anyone with schizophrenia, treatment resistant major depression, bipolar disease if their illness is “real” and whether it keeps folks from living a full life and reaching our potential.

      Parkinson’s disease used to be considered a “somatic syndrome”–“people exaggerating symptoms.”

      I have four siblings who are all MDs in specialties such as pulmonologist, cardiologist, etc and they ALL call me “weak” a “basket case looking for attention.”

      The medical profession is an archaic old boys’ club even with women MDs. They are HIGHLY resistant to change.

      So continue to work with MDs and nurse practitioners who “get it.” MDs and NPs with open minds who accept us as hard working people who don’t “want” to be ill.

      Are we looking for “attention?” You’re darn RIGHT we are attention-seeking! We want the medical profession to pay attention to our REAL disease and actually do more extensive research.

      I remember in med school and my cardiology rotation back in the 1971 when doctors didn’t think that women had massive heart attacks! In fact the number one killer of women is heart disease. We women simply have DIFFERENT symptoms. A man will present with crushing chest pain, left arm pain, etc. Women present with unusual fatigue, and difficulty breathing. They were diagnosed with the “flu” and sent home and died.

      So stick together my friends! Don’t let the “trolls” get you down. I would advise that you stay OFF “social media.” I advise ALL my patients to NOT get on Twitter or Facebook. Instead keep up REAL friendships via face to face, telephone (NOT texting), letters…not email. Writing letters with beautiful cards and linen stationery is a wonderful way to get your feelings and life down. People NEVER throw handwritten notes away.

      Also knitting, crochet, embroidery, cross stitch are FANTASTIC ways to relax and you have something beautiful that YOU made. Read a good book–suspense, mysteries! (I love Tana French!)

      Chin up! Love each other! Love YOURSELF. To HELL with “social media” and selfies blah, blah, blah!

      • Kathy says:

        What meds do you treat your fibro patients with? I refuse to go back on gabapentin. It stole my words and thoughts. I take an antidepressant and norco TID. The norco seems to keep the pain down to a livable level. If I take it TID it seems that I don’t have peaks and valleys in the pain level. what do you know about the Fm/a test and the vaccine? I have an appt with my doctor on the 7th and plan to ask him a ton of questions. I am also thinking of swithching from a GP to an internal meds doc. The internal meds doc believes fibro is real. My GP knows me pretty well as we opened his practice together. He know that I’m not a wimpy person and when I tell him that I hurt, I hurt! I sometimes feel like he’s frustrated with me. I am afraid of “doctor hopping” and the stigma of “drug seeking” being put into my records. Just curious as to what other docs are doing with their pts. Thanks you!

      • Janice says:

        Right on!
        I’ve gone through doctors like potato chips – the bad kind that leaves a terrible taste in your mouth!
        But, I never gave up and found one this year who actually knows something about FM. A 17 year search.
        I’m just starting to try medical marijuana and it seems to be helping.
        There does come a time when you have to decide who you will allow into your close space and private life. One cannot afford to allow someone near me who will invalidate what a person is experiencing. So for many, it must remain an arm’s length friendship or acquaintance

        Nice to hear your intelligence, compassion and encouragement.
        A question to you, if I may. Was your diagnosis the catalyst to enter the medical field and did you change your perspective on what you thought what a doctor is once diagnosed?

        Thank you Helen and I’m sure many reading your words of encouragement and advice will benefit greatly knowing at least one doctor really understands.

      • Sally Ferguson says:

        Re the idea that it’s “just” a psychiatric disorder: in the big picture since our brains control our bodies, virtually every disease or disorder is to some extent a psychiatric one. The distinction is a hazy one – even something like a broken bone will carry emotional reactions, possible depression due to inability to take part in typical activities etc. Likewise something that starts with a brain disorder can produce bodily symptoms of all sorts. So I’m always baffled by the butt-headedness of saying that something’s purely psychiatric or “all in your head”, as if the distinction between mind and body were some kind of hard and fast line. It’s not. We’re whole beings, body and mind, and the interactions go both ways. Thanks for your work educating your colleagues!

  3. Michelle Preston says:

    Michelle Preston
    I have suffered from Fibromyalgia for going on 18 years now and I am only 35 years old but feel about 90. Comments like that just prove the ignorance we live amongst. I am one of the few that has FM and has always worked ( not easy) but unfortunately I am now after 18 years of pure torture day in and day out with my FM I am at a point where I now have no choice but to leave my job, which is a very scary thing to even have to contemplate, but sadly with FM the choice is not ours as there is no choice. Thank god for Lady Gaga being one of the braver few to come forward as I myself have not been so brave to share my illness with many. No one will truly understand our battle unless they too one day have to fight the same battle- and I truly hope not many more people would have to feel what we battle on a daily basis. To the ignorant people out there please educate yourselves to help others you never know what’s round the corner.

    • Helen Nuschler says:

      Accept that the medical profession is still in the dark ages when it comes to “complex syndromes.” MDs are great with one illness with definite x-ray and lab results. A patient comes in with a broken arm with the bone sticking out–hey easy diagnosis and REAL!

      Now you have overdone it and are flat down with incredible pain. You feel as if you have been hit with a truck. Your doctor is away or you are traveling so you go to an ER. These ER doctors and nurses don’t have a CLUE! So instead of the doctor saying “I apologize for not knowing more about your disease–let me consult with a rheumatologist” they blame YOU. “it’s all in your head” or “are you trying to get narcotics from me?” ER doctors are GREAT at broken bones, gun shot wounds, and trauma that they can see and touch. Anything else is WAY too complex for them. That’s WHY they got into emergency medicine…for the OBVIOUS stuff.

      This disease is NOT YOUR FAULT. It is as real as cancer, heart disease, schizophrenia or any other illness that has been studied well.

      Accept what you can and can’t do. You are NOT your job. You are NOT your disability. I read about the people who were shot in Las Vegas. 58 were murdered BUT over 500 were “injured.” I’ve been in a war zone. Bullets cause incredible damage. On TV the hero is shot, puts a bandage on the minor bleeding and continues. No. One of the women who was shot is now a quadriplegic WITHOUT health insurance. She has no choice but to accept this overwhelming disability. Never to use her arms and legs AGAIN.

      We also are very disabled. You do NOT need to “share” your illness. It’s yours. I hope that your doctors have obtained 100% disability for you. I have fifteen men and women on full disability because of fibro.

      My internist actually had me set an egg timer to 15 minutes. I can do something like work in my garden, walk, vacuum, but when 15 minutes are up? STOP! You MUST take frequent breaks. Listen to your body and don’t try to “fight through” the pain and exhaustion.

      The world is full of uneducated, low information folks. You can help gently “educate” close friends and family. Heck most people don’t think that depression is real!

      Move on. Love yourself and accept that you have an AWFUL illness. Don’t waste precious energy on fools and trolls!

      • ann says:

        you are so right Helen, I have come off FB etc, because I can’t tolerate the constant nasty comments. As you say most diseases, when first brought to light are not taken seriously. Lets hope fibro gets the correct understanding soon. It is a hard enough battle to get through the day, without the none believers . As for the fibro sufferers who think lady gaga can’t have it because she manages to work still, should be ashamed to think like that. All illnessess, cancer, motor neurone, parkinsons to name a few, have different stages and levels of severity. gentle hugs to all suffering.

  4. John Anderson says:

    Of course none of that deals with the fact that young and middle aged men get it too.
    I’d have more support as a man with fibro if I had breast cancer instead.

    • Noah says:

      I find as a guy suffering with Fibro and CFS it is very challenging to explain my condition to people to the point where I have it scripted out…does not do any good as the stigma of being a guy and looking healthy on the outside is unexplainable to most people so I just gave up.

  5. Kathy says:

    I posted a question on another fibro website and I will ask again here. I have EBV, also. I am sorry for your pain. Do you think that fibro and EBV are related or are they part of cause? I am wondering what role they play together, if one contributes to the other or what. How many of us with fibro also have EBV?

    • Kathy, from my experience yes there is a very real link. When diagnosing FM you must have antibodies for EB, cytomegalovirus,and a few others. You must have had at least 3 of these illnesses previously, along with all the typical Fibromyalgia symptoms, to get a positive diagnosis. New diagnostic evidence is being found via MRI’s of the brain in certain areas too, but studies are in the early phases

  6. Jean Bruce says:

    I feel really sad, reading all this,l have had only had half a life, because of my fibromyalgia, keep hoping for a cure, but getting old, not getting any better, family,ect don’t really want to know,l did not ask for this ,l don’t imagine l have it, like us all, not to be believed is almost unbearable.

    • Michelle Drake says:

      Kathy,what is EBV? John,I’m sure it’s even worse to have fibro as a man since it’s a “women’s disease.” I’m sure you really get alot of blank stares or rude comments! I’m sorry 😞

      • Kathy says:

        Michelle, it is Epstein barr virus. It causes mononucleosis and Bells palsy.I was curious as to how many other fibro patients had it. It can lay dormant until whenever it decides to rear its ugly head. I believe that it has something to do with fibro and just was kind of taking an informal poll to see if others had it along with the fibro.
        John, in no way am I belittling you, but statistically men are are treated better than women in the medical field. I truly am sorry for the fibro diagnosis, I would not wish it on any one. I truly hope you are being treated for the pain.So many people call it a woman’s disease when it is a human disease. Gentle hugs to you. I believe that my brother may have it, but he informed me only females get it. No use trying to explain to him, he is who he is.

  7. Lindy Brockington says:

    One of the saddest things about this is many of these types of comments come from people who have fibromyalgia. I am on a Fibro facebook group and when this story broke, SO many of the members of the group were skeptical and critical of Lady Gaga. “Well, she can’t possibly have FM if she can be as active as she is” and stuff like this. Sometimes it seems like the FM community is their own worst enemy.

  8. Sally Ferguson says:

    I’ve found that most people at least try to be understanding, but I do get the occasional “you look great, you must be feeling better” kinds of comments. I tell them I’d trade my insides for my outsides any day. I’d rather look like a wizened old crone (which is how I feel) and feel great than look great and feel like a wizened old crone. I try to remember that the negative comments say more about the other person than they do about me. They are not really about me at all. They’re about how ignorant, or lacking in empathy, or whatever that the other person is. That’s helped me get over the sting of those negative comments. I’m sure Lady Gaga is getting a lot of support but it must really sting for her to be getting so much negativity and hate. I wish I could give her a hug and tell her I believe her and I’m grateful for the fact that she’s still willing to work to share her art with us even though it causes her so much pain and distress.

  9. Betsy Jacobson (formerly Fibrobetsy) says:

    I’ve been “working” the FM field for a lot of years, and let me tell you, that before you blame your friends and relatives for their horrible remarks about your life with FM, blame, first, the doctors who treat you less than professionally if you have FM. This causes terrible grief, & we with FM have trouble dealing with stress, since ours is a CNS condition. I don’t mean to pardon the stinkers who say & think bad things, but it is very important that we find someone who can teach doctors to think differently. (Stop laughing.) (Please.)

  10. Betsy Jacobson (formerly Fibrobetsy) says:

    I also resent terribly the fact that ANYone doesn’t believe our FM problems unless we’re rich and famous like Lady Gaga. I’m quite sure that doctors believe HER.

  11. Deb McCall says:

    I was diagnosed in 2015 with Fibromyalgia after battling chronic back pain for years, immense stress at my job (still ongoing), and then a total hip replacement at 53 which is when it hit-my body said this is enough. I still work everyday but struggle to get out of bed each day, am in constant pain, and have had to reduce my normal activities to smaller amounts of time spent doing what I love. I like others am afraid to tell people. I am not a hypochondriac. I seldom complain about my pain. I go to work everyday because I have to, but it is hard. I have an extremely high pain tolerance and refuse to give up on enjoying life, but pray that this is not a life long problem for me.
    I hope there is a way to reverse this, when my stress is gone or when more is known about what causes this pain. My other hope is that the stigmatism of it all being your head is removed. It is so not true, feeling like someone beat on you all night is real, that pain is real. The best way I can describe my pain is feeling bruised all over, like I took a beating.

    • Janice says:

      I wasn’t diagnoses until after having FM for 3 years, so more damage had been done than good.
      In the early stages, I would suggest not taking any of the current trendy medications they’re pushing for FM patients, eg. Cymbalta and all those like it. The side effects of these meds are worse than the FM itself and only complicate your condition.
      Try a more naturopathic approach, eg. as I mentioned earlier, Arnica (3-4 pellets, especially at bedtime). You can take them a couple of times during the day at work (on empty stomach) and it does help with the pain. Look up Dr. Axe (youtube) on the subject, he has good nutritional suggestions. Look for a doctor who deals with integrative medicine, naturopaths, or functional medicine (includes diets). I’ve been treated with acupuncture for pinched nerves and it saved me when nothing else did (expensive though, but it’s an investment).
      Drink mega amounts of non-chlorinated water (at least 8-10 glasses+) and NO, NO, NO sugar (my biggest sin), which means no muffins, no cookies, jam etc. Sugar is a real culprit and guaranteed to escalate the pain and FM symptoms. I get the peanut butter from the health store, fresh, crunchy and now I’m addicted. It’s my go to when I want something to satisfy my sweet craving – but it has no sugar!
      I have just started to use medical marijuana (tried it 3 times now) in the oil form. It is one of the mildest with a low THC (the buzz stuff) and moderate CBD (for pain). You don’t feel as though you’ve taken anything except that your head becomes clear (feels like a normal head for a change) and focused, thus allowing you to keep the pain in perspective; no problem driving or any other activities. This is the daytime one I’m trying, next will be the stronger stuff for sleeping and heavy pain when not going anywhere.
      I wish I had known about this, then, but there wasn’t anything known about FM treatment other than the standard pharmaceutical medications.
      Look into natural diets including probiotics and one that is easy on the gut. The gut is profoundly important for FM, and most conditions, as it pretty much dictates how it wants the body to act. I also have Crohn’s, so I’ve been studying the gut for over 35 years now and experimented a lot.
      It is not an easy thing to live with and your life sure changes, doesn’t it. Do your best and not what others want you to do. My motto is I do what I can, when I can and how I can. But it took me many years to learn this.
      Good luck to you Deb and I hope you’ll get us/me up-to-date on how you do via this website. This is a good tool for us FMers to go to on a regular basis. It’s informative and supportive.
      Cheers and blessings.

    • Janice says:

      I have tried the medical marijuana oil 3 times this week and today was the real test. I was not a human when I woke up! Incredibly bad day and I decided to take another dose of the oil……unbelievable!
      Within an hour I started feeling focuses, my vision was clearer, the pain had decreased to the point I was able to eat, take a shower and go out for groceries.
      I went around the house saying ‘Thank you Lord, Thank you Lord’. Just amazing.
      If you want to know what I took, respond. This may be what you need to get through the day at work. It is very mild and, of course, no ‘buzz’.
      I’m elated with the results and wanted to let you know.

  12. Darlene says:

    A few years before my official diagnosis I was an Irish Dancer. When I stopped dancing my symptoms got worse. One thing that had always been said is exercise is good for us with fibromyalgia. So with Lady Gaga being active it took longer for her symptoms to get so bad that she had to cancel concerts.

  13. Sharon says:

    I’ve had Fibromylgia since I was in my early 30’s, I will next be 70. I was extremely fortunate to have had a doctor with Fibromylgia knowledge. He sent me to numerous specialist to rule out anything else. I actually went 10 years without pain meds because I needed to be available for my 3 young children at all times. I had to find a different way to clean house, remember to not carry multiple bags of groceries at a time, buy milk in quart size, pass the vacuum to someone else. When going anywhere bring a sweater, because another place might be much too cold and my pain would increase. I have been on 3 RX’s for my pain and managed to reduce that number down to 2. Trust me, naturally do not want to be drugged, just please get to a bearable state of pain. When I do travel away from home I have found it very helpful to have copies of medical records and years of medications from my pharmacy. I am very careful taking meds, most of the time I can now wait several days before getting my refills as I did not need every dose on a day.
    I don’t need sympathy, nor do I need any rude, mean spirited remarks. I am still taking care of myself and no longer feel upset when someone else doesn’t get it. Just say a little prayer that tomorrow will be better.
    To those suffering from Fibromylgia may you find support and the solutions you need as we all have our own specific battle with this.

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