CFS & Fibromyalgia Are No Joke, But We’re Treated Like It Is

I have a lot of fun joking around with my co-workers and some of the people I work with like to comment repeatedly about the fact that I work such limited hours. I often hear:

  • “It must be nice to only work one/two days a week”.
  • “It must be nice to not have to work a regular job for a living”.
  • “Why not get a real job like the rest of us?”

I always take it in stride and have fun, and make joking comments back and my favorite comeback is usually, “If you take my illnesses then I would gladly take your work schedule”.  No one wants to trade, however!  I had a conversation today with one person who said he has a “hard time” believing in the illnesses that I have.  He said everyone has “chronic fatigue” and when he was a kid there was no such thing as “fibromyalgia”.  People were just in pain.  He said that he was tired too when he left work. 

I tried to explain to him the difference between what the illness “Chronic Fatigue Syndrome” is and what normal fatigue is.  He still didn’t get it and probably never will.  I finally just said, “If you lived with me, you would believe it.”, and I walked away.  When someone says they have cancer, multiple sclerosis, or another disabling disease, no one questions it.  When we talk about our illness, it’s like we are constantly defending ourselves over and over again.  Then when I went on break I found myself feeling “less than” because once again someone doesn’t get it.

But then I had my own little pep talk:  I know who I am better than anyone.  These people I work with see me a few short hours a week.  They haven’t known me over the last 20 years.  I’m proud of myself for trying.  I work when I’m able to work, no matter how little it may be.  When I can’t, I can’t.  I think that ought to mean something.  None of these people saw me working 10 – 12 hours a day or longer, 6 and 7 days a week for years.  They have no clue what my life has been like, what I have been through and I don’t owe explanations to anyone. 

I know there are people I work with who see that I try and that I work hard even with the physical restrictions that I have.  But I’m through with the days of feeling like I have to prove that I can do it all even though I physically can’t.  I’m not taking that road again for anyone.  It’s not worth it.  My family needs me too much and I will not ruin myself to prove anything to anyone anymore.

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  1. Michelle Wordley says:

    I agree Sandy… This, I find, is the hardest part of having this disease. SOme days I wish I had cancer or a stroke… But I have this. ANd dealing wtih peoples reactions make a hard disease harder. You have the right attitude. People dont know you, they dont know the illness. There has to be more training for society! ME/CFS has to get the word out there.

  2. Sandy, you are so right in what you say. I can’t imagine how I would have reacted to the conversation you mentioned, but I’m pretty certain I would have tried to smile through it.
    I too try to do everything to prove my worth, but we are under constant pressure to achieve aren’t we.

    People seem to think if you’re upright and at work, you are OK to be there.
    CFS/ME and working is a huge knotty issue which is worthy of lots of discussion and awareness raising.

    Go Sandy!

  3. I so hear you on this one. I have had that conversation too many times. It seems like a lot of people feel that way – I’m tired too, etc. People that are generally healthy have no idea what it feels like to have this. It drives me crazy that people would think that I’d do nothing and rest all day because I want to. It seems like everyone I know with these illnesses are super hard workers with ambition and a very high level of conscientiousness. You handled it well! Good job on turning it around and giving yourself a pep talk!!

  4. I know one lady with Chronic Fatigue Syndrome. She lay’s in bed all day like a massive great blob. Claiming Incapacity Benefit and Disability Living Allowance. In reality there is nothing wrong with her as she stay’s in bed all day but is rummaging around all night – I know because I live in the flat above her. Having Chronic Fatigue Syndrome doesn’t stop her walking to the shop to buy her 40 Superkings a day. She is quite the drama queen and loves to stir any trouble she can. To me CFS, if it exists at all, is simply depression and people who have it are generally attention seekers.

    • JG, It’s comments like yours that prove the amount of ignorance that exists surrounding this illness. Many of us are up at night because our bodies are so messed up our sleep cycles don’t function properly like a normal person’s. It’s sad that you won’t take the time to learn more about the illness and just assume that we are all depressed attention seekers.

  5. People truly do not get it and never will, unless they are unfortunate enough to be cursed with cfs/fm. People with this disease already feel worthless at times and it doesn’t help to have others be so intolerant or uncompassionate towards them. I have had cfs/fm for going on 3 years. The hardest thing for me to overcome was that I could no longer be the active, productive person I once was. I felt worthless as a wife and mother. I still have days when I feel like that, but thank the Lord I have a wonderful family and a few wonderful friends who know I am not crazy. When I read posts from others it makes me cry, and it also gives me peace to know that I am not lazy and unmotivated, this is a very real condition.

    • Hi Tara, I know – it’s sad that there are people like this in the world who don’t give a crap about others and who are not empathetic to what we are going through at all. It disgusts me honestly. I understand where you are coming from and I often feel worthless myself. You are not lazy – YOU ARE SICK. Just keep telling yourself that you are worthy, ok?

  6. I wonder JG if you have had the flu? How good was your sleep? Did you take time off work because you just didnt have the energy to get there and be productive, you wouldn’t have been able to concentrate, you were aching all over? When you couldn’t sleep did you get up and do something till you were that exhausted you thought you’d be able to sleep, only to find that the aches and pains made falling asleep hard? Did you then wake to feel totally trashed? Welcome to our world! 24/7 with little hope of recovery. How would you cope knowing that you’d never get over the worst part of the flu and you’d always feel like that? There is strong evidence that ME/CFS is caused by a retro-virus – chicken pox and glandular fever are examples of retroviruses which can flare years later (e.g. shingles). The virus lives in your cells mutating, causing an immune response. JD educate yourself before showing your ignorance. Sandy, thanks for your posts and bravery.

  7. Fibromyalgia, CFS, AF, none of these are any kind of joke. My dear friend has fibromyalgia, and I surely feel for her. If she doesn’t take her mg/malic acid, she hurts and hurts bad. But before that, she’s hurt bad for years. Now she’s a lot better. I also have a friend that has CFS, and believe it or not, she’s disabled. Her doctor also told her to take magnesium, and she does.

    I hope that your days can get better. Being in pain day after day, and not finding the answer can be horrible.

  8. Get this book: Pain Free 1-2-3: A Proven Program for Eliminating Chronic Pain Now. It’s by Dr. Jacob Teitelbaum, who has suffered from CFS and fibromyalgia. This is what he states at Amazon:

    “1975 was a really rough year. I was caught in the middle of a family melt down while in my third year of medical school. I was 22, and my father had died years earlier so I was paying my own way. Finally the stress caught up with me. I had what I called the “drop dead flu”. Three months later, I was still exhausted, unable to sleep, achy all over and had no brain. Devastated I had to drop out of medical school. As I was paying my own way and relying on scholarships, student loans, and work (which I was now too sick to do) I found myself homeless and sleeping in parks. This was my introduction to Chronic Fatigue Syndrome and Fibromyalgia.

    Fortunately, I met a number of people who taught me what I needed to know to get well, and a year later I was back in medical school getting honors. Over the last 30 years, medicine has learned more and more about Chronic Fatigue Syndrome,Fibromyalgia, and chronic pain -despite most doctors still being clueless about these problems. Making effective treatment available for everyone with CFS, Fibromyalgia, and chronic pain has been my life’s work. I have the honor of serving as Medical Director of the Annapolis Research Center for Effective CFS & Fibromyalgia Therapies,Senior author of the landmark study “Effective Treatment of Chronic Fatigue Syndrome and Fibromyalgia — a Placebo-controlled Study” and Author of the best-selling book “From Fatigued to Fantastic!”, ” Three Steps to Happiness! Healing through Joy”, and the recently released “Pain Free 1-2-3- A Proven Program to Get YOU Pain Free NOW!” I also am regularly in the media, including CNN, FOX National News, USA Today, etc so we can get the information out that people need. For more information on how you can get well now, I invite you to visit my web site at:
    I know it’s been difficult for you. The good news is that, having HAD these problems, I can tell you that it is possible to get well and get your life back-NOW!”

    This doctor talks about magnesium malate (malic acid) as two nutrients to helping fight the fibromyalgia.

  9. dollar - South Afirca says:

    Sandy good work keep it up by sharing your experience help’s others like us to cope and know we not alone.Truth is thruth no matter you like it or not. the condition is here and alive but it need us to e strong.

    i understand JC but i will be very happy if he/she can keep it to himself what does not make u stron.We don’t need his/her sympathy or empathy but just a mind to think.You know you don’t know what others have until it happens to you.We need to be sensitive about issues not to make jokes where they are not needed.

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