Fibromyalgia

What’s worse than having fibromyalgia?

I started a new job last week, and it’s fair to say that pre-work nerves are that little bit worse when you have a chronic health condition. How will you explain it to your boss, without sounding incompetent? How will you commit to doing your job well, without taking on too much and over-compensating? Striking that balance is so important, and that’s the bit I was feeling nervous about.

feel alive

So on my first day, I made myself a promise. Be totally completely 100% honest – even if I end up sounding a bit crazy. “Oh, I have this pain thing, it means sometimes I can’t walk but sometimes I’m fine…” It’s the first time I’ve been really honest with my boss on the first day of a new job, and it felt really good.

That is, until I hit Google.

I got home and thought, if someone I managed told me they had a condition I’d never heard of, the first thing I’d do is some research. And thankfully, there are some amazingly good blogs, medical associations and NHS websites dedicated to providing accurate information on lesser-known illnesses. Unfortunately, there are also things like this:

1

And this:

2

And at this point, I am mainly wondering who on earth is spending their time creating memes to slay fibromyalgia sufferers. (But seriously, if you are going to spend your time doing that, at least make them witty. Please.)

It was around this time that I thought, what’s worse than having fibromyalgia? It’s feeling embarrassed at having fibromyalgia. It’s wanting someone to respect you and value you professionally, knowing that they may have seen things like this and therefore not believe you. If you have never met me, if you don’t know how hard I push myself, then how can I convince you in five minutes that I am genuine? How do I tell you this is real when half the medical community don’t believe it? And how did we get to a position in 2016 where people with no medical knowledge at all have heard about fibromyalgia, only because it’s the made up condition that they can make fun of? I can’t think of a single other health problem where this is accepted.

Still, hopefully, medical research will soon show the pathology behind this condition and we will be able to explain our health. In the mean time ,the fibromyalgia community will continue to build the integrity and understanding that is so desperately needed.

Happy Friday folks, keep on fighting. x

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25 comments on “What’s worse than having fibromyalgia?

  1. It’s such a weird situation with fibromyalgia– when we feel we need to justify ourselves. It shouldn’t be like that and it’s shocking that this stuff happens. I hope you are enjoying your new job and your new boss is supportive

    • She’s absolutely incredible! More on that in the next week or two. 😉 You’re right… It is just plain weird. I figure our voices have got to count for something though.

  2. I get hateful “men’s rights activists” tweeting me because of my activism for medical sexism. Who spends their days looking for someone to harass? It’s pathetic.

  3. I actually do understand you, considering I have chronic Lyme disease and fibromyalgia. A lot of people know what Lyme disease is, but CHRONIC Lyme disease is soooo controversial. 99% of the doctors I’ve been to–that aren’t Lyme Literate Medical Doctors–and we’re talking a lot of doctors here, have told me that I either need to get off my meds or that chronic Lyme disease in no way exists (even an Infectious Disease doctor told me this, even hinting that Lyme itself is made up). My former GYNECOLOGIST tried to tell me I “probably should get a second opinion”–UMM excuse me but treat me for what you’re an expert in, not for what you obviously have no clue about. I’ve especially gotten so much crap now that Yolanda Foster has come out saying that she has chronic Lyme. People are calling it the new “rich person’s disease.” Uh okay..well that’s cool but I’m definitely not rich and if I were, I’d probably be able to afford some cool treatments to at least manage my pain better. It becomes exhausting enough when you are explaining yourself nearly all the time to regular everyday people, friends, family members–much less medical professionals. I have so many stories–funny, sad, you name it–revolving around doctors and my Lyme disease as well as symptoms that have tagged along with it, like fibro. Oh the stories… Anyhow, yes, I definitely feel your pain. Both emotionally and physically. And I hope something clicks with everyone soon and they realize this stuff isn’t a joke.

    Sorry for the major rant! xo

    • Ah I’m so sorry. I totally feel your pain (no pun intended) and I really hope people start paying attention to you, me and so many others that are going through this struggle. And no apology needed, come here to rant any time! 🙂 x

    • I don’t want to seem promotional here at all, but if you’re interested in sharing one or more of your stories you can at http://www.misstreated.org. I know how frustrating dealing with doctors is. Cheers!

  4. I know exactly what you mean! I start a new job next week and can’t stop thinking about it. My last workplace was amazingly supportive but I was there when I first got sick so they saw it all first hand. Trying not to stress about next week, eek!

    • Oh good luck good luck! I have had an amazing experience at my new job, my boss is really supportive and I feel much better having been honest from the start. I hope it goes okay x

  5. I have fmla for my fibromyalgia. .its a life saver for my job..I myself am having a I can’t walk day or get out of bed day…fibro sucks..

  6. Thank you for sharing this! It’s not easy being so upfront with Fibro – as a man, even among people who believe Fibro is real, I get the inevitable, “I thought only women get Fibro?”

    I generally just people at work I have a neurological disorder. Most of the evidence says Fibro is ultimately neurological, and people don’t question the vagueness at all because neurological issues are complex and invisible.

  7. Chrissy Talty

    As a nurse with fibro, it’s really a struggle because it’s such a highly physically demanding job, and I’ve had to make adjustments and there have been times I’ve had to “suck it up” if a patient was at risk, and pay for it later. In my profession, we have to be up front about our physical abilities, so I can’t hide it from my boss. And I also have horrible chronic migraines to go with it. But, here’s hope… Fibromyalgia has now been classified as a real, actual, billable, diagnosable disease. So any person, Doctor, medical professional, or other ignorant person that thinks we are making it up is WRONG! And the medical community backs us now!

    • It’s such a break through isn’t it?! Hopefully this is the start of a new treatment path for newly diagnosed fibro sufferers. Hope your pain is manageable today! X

  8. Abby Lilly

    I just lost my job because of fibro and dealing with fibro fog. In less than 2 months, my ex-boss had decided that my work had gone from “overwhelmingly exceptional” to “completely unacceptable”. I had tried to explain to him what my limitations were, but he just didn’t care. He ended up passing it off as “hiring someone full-time and bypassing the temp agency” when I’d worked in that capacity for the last 1.5 years as a temp. I don’t know what I’m going to do about another job. I’m looking, but everything I’m finding has a good amount of labor involved, and with my legs hurting so bad I could scream, I don’t know how I could do them.

    • Abby I’m so so sorry. You should definitely check in with your HR team because it’s illegal to dismiss someone for health reasons alone. How long have you had fibro? I quit my job when I was first ill, I just couldn’t handle the pain and full time work. But, over the years, I’ve learned to manage my condition and although I still have very bad days, it’s doable. Just give yourself some time. I hope you find a caring organisation to work for soon. x

  9. Leonilde Tavares

    My sincere cimpathy to all of us who suffer and struggle with fibro everyday in our society. I believe medical professionals now understand it better, but it only took a decade to too. Unfortunately it’s taking longer for the community to understand and respect those that struggle with this disorder. Only if they knew how much we have to sacrifice and adjust. I have been struggling with fibro for about 4 years now I’m 32 years old now, with two children, a four month old and a five year old. Mommy should be able to do it, at least that’s what I always wanted to play and run, but this takes all my energy and patience and leaves me with severe pain throughout my body. It’s hard having to explain and justify everyday why we feel the way we do. My coworker one day said “oh everybody now has fibro”. At times I feel like I’m about to drop my baby cause my hands get so weak and hurts. I just lost my job from six years in a process of filling for Fmla. But I’m okay, I pray everyday to get better to learn how to cope with this, so I can be there for my kids and see them grow actively.
    From someone who cares, stay positive.

    • Oh my goodness Leonilde, you have my sympathy! I can barely look after myself some days, never mind two children. To all the fibro parents out there, you do an incredible job and your kids will grow up knowing what true love and selflessness is. Well done you! I have also said a coworker tell me “everybody has fibro”. No one would ever roll their eyes and say, “oh, everybody has cancer.” In fact… that may be a new blog post! Good luck, and positive wishes to you too.

  10. Tonyia Canales

    We still have a long way to go! My Neurologist took me off work so he could increase the dosages on my meds and MetLife denied my short term disability. They said “All your tests results came back negative. My response, “The tests were ran to rule out anything other than Fibro. Do my records indicate Fibromyalgia, chronic pain and the long list of meds I am taking?” Their response was,”Yes but all your results were negative, so how do they know you have it?” ARGH! I am so frustrated and exhausted. I have been at my job 10 years. My PCP and my Neurologists both sent in paperwork for STD and I was denied.

    • Oh it’s so so frustrating isn’t it? I think diagnosis is the main thing that needs attention, because the lengthy nightmare we’ve all been through that is basically a process of elimination is just not okay. I had to quit my job in my first year of diagnosis, just to work out how to manage my pain and what kind of work I could do. I hope it gets easier for you.

  11. Best wishes for your new job. I rarely discuss fibro, it is a private matter, not least because there is such a spectrum of experiences within that diagnosis. After 20 years and several different treatment regimes, I am confident about the authority I have for my fibro, where it fits on the spectrum of experiences and how it responds to various things. If you took a year off to sort out how to manage your pain and re-evaluate what you can do, you can be confident in your authority too.
    I had a period when I felt I needed to disclose my illness to colleagues. With hindsight, it had little if any beneficial effects. Some of them would still laugh at me waiting for a lift rather than bounding up the stairs as was the culture there, or make jokes about it as they walked passed. I learned thoughtless people abound, and there is nought to be done about that.

    • That’s really interesting Michael, and I think the authority point is really valid. We really have to own this and be confident with it. I think telling people probably depends on the industry… I’ve kept it secret in some roles where I know I won’t ‘win the battle’ but telling others has made life much easier. Still, it all comes down to what you’re personally comfortable with.

  12. Try being a guy and explaining it. My current boss of 2 years could care less what I am dealing with. My last 2 employeers were great. Not now.

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