5 things I wish people knew about Fibromyalgia & ME/CFS. Click to read or pin to save for later.
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Fibromyalgia and ME/CFS are potentially life-changing illnesses. Yet so much is misunderstood about them. Unless you have the illnesses yourself or are very close to someone who does, you are unlikely to see and appreciate the full impact.

Today, as it is Fibromyalgia and ME/CFS Awareness Day, I wanted to share a few things I wish people knew about Fibromyalgia & ME/CFS. Within the post, I have also included images of tweets from the chronic illness community on Twitter, sharing what others wished people knew.

I hope that this post helps to raise awareness and understanding of these illnesses.

1. How we look does not reflect how we feel

You’re looking well!” “But you don’t look sick.” These are just two examples of what people have a tendency to say to people with Fibromyalgia and ME/CFS. These statements may well be true and come from a place of kindness. But, the problem is that Fibromyalgia and ME/CFS are called invisible illnesses for a reason.

How someone looks on the outside does not reflect how they feel on the inside. People with Fibromyalgia and ME/CFS feel flu-like, fatigued and in pain daily. The symptoms can wax and wane; some days are better than others. But they are always present to one extent or another. Even when we look well.

Many feel judged because they “look well” but are unable to do what people expect of them. Looks mean nothing in the world of Fibromyalgia and ME/CFS. It might not always rob our looks, but it certainly robs us of living a normal life.

What I wished people knew about Fibromyalgia & ME/CFS. It leaves you living half a life. Click to read or pin to save for later.

2. Being happy and positive does not mean our illness isn’t serious or that we aren’t suffering

If you had a chronic illness would you want to be miserable every single moment of every day? I doubt it because that would be an awful existence. Fibromyalgia and ME/CFS patients are incredibly resilient, determined and are some of the strongest people I know. We learn coping mechanisms to allow us to live as well as possible despite the symptoms and challenges we face.

It’s worth remembering that, just because someone appears happy and positive, it doesn’t mean they are not suffering. It simply means they have learned to do the best with the cards they were handed in life. They have learned to be grateful and appreciate what they do have.

Under that smile, still, lies a broken body.

3. Illness is not black and white, neither is Fibromyalgia & ME/CFS

Society is generally prejudiced against the sick. The thought tends to be that you are either sick enough to be in bed or you are well enough to be at work. If you are well enough to do X you should be able to Y. This is the attitude many with Fibromyalgia and ME/CFS come across. It neglects the huge grey area of chronic illness that exists.

There is little understanding of the variability of these illnesses or the impact activity can have on symptoms. Sure a Fibromyalgia or ME/CFS patient may be able to meet their friend for coffee one day and appear happy and positive. What most won’t understand is that to enable them to go, they have had to spend hours to a day or more resting in preparation.

During the outing, someone may look like they are enjoying themselves when actually they are in a lot of pain and are feeling exhausted. The suffering is hidden under the smile. The lights, sounds and smells of the coffee shop can be overwhelming and intensify symptoms.

Afterwards, the person with Fibromyalgia or ME/CFS comes home and crashes in bed. They will potentially need to stay there for hours to days in order to recharge. Plus, they will be suffering a flare-up of symptoms. It’s the part of these illnesses that you do not see.

Two posts that explain this in more detail and get this point across really well are: ‘Well enough to drink coffee‘ by Sally Burch and ‘The M.E. Adventures comic: energy and exertion” by  Laura Chamberlain. Both are important reads.

Chronic illness is not black and white. Click to read or pin to save for later.

4. We do not say no to things because we don’t want to go

From my last point, I hope you can appreciate that pushing ourselves to do an activity comes at a cost. We have an energy budget and if we overspend it then the cost is suffering a flare-up (aka worsening) of symptoms.

The energy budget available depends on the individual and the severity of illness. It also depends on what they have been doing recently. For some, I’m talking simple tasks like washing and cooking for themselves. These can be enough to wipe out someone’s energy. For a better understanding of the concept of an energy budget in Fibromyalgia and ME/CFS patients, have a read of the Spoon Theory.

Depending on how we are feeling, we may decide it’s worth pushing ourselves and overspending our energy budget to do something. Other times, we have to put our health first and say no. Sometimes that’s because we physically can’t do something because we’ve already in debt. Other times it’s because we aren’t able to suffer the consequences because it is mentally and physically challenging.

What people need to realise is that we don’t use illness as an excuse. Believe me, we would LOVE to go to everything we get invited to. We would give ANYTHING to live a normal life. When we are forced to say no we beat ourselves up because our bodies have failed us. We feel incredible guilt because we feel we have let you down. Please show compassion and understanding instead of judgement in this situation.

ME/CFS changes how we live our lives. I wish people understood that. Click to read or pin to save for later.

5. Your advice and attempts to help can be misguided and, at times, irritating

Advice can be helpful when it is given in a compassionate and sensible way. Unfortunately, most people see a headline on social media and are convinced it’s the missing link someone with Fibromyalgia or ME/CFS has missed (sometimes without even reading the article).

Oh have you thought of *insert thing that someone with Fibromyalgia or ME/CFS has heard a bazillion times*.”

It’s not as simple as giving up this food or eating more of that food. We don’t need to “just go back to the doctor” because we’ve already had the tests you think we need and there’s no more conventional medicine can do for us. Saying these things can be akin to “you aren’t trying hard enough”, so you do need to be cautious and think before sending that link.

Rather than being a google doctor and sending random links to everything and anything you come across, appreciate that we’ve become our own health experts. If you’ve read it, we likely have too. Leave us to the health side of things and instead focus on how you can support us in a practical way. We will appreciate this more.

Being bombarded with article after article after article just makes us want to bang our heads against a brick wall. Trust me, when I say we are in enough pain as it is and don’t need this 😉

What do you wish people knew about Fibromyalgia and ME/CFS? Please leave your thoughts in the comments down below.

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These are 5 things I wish people knew about Fibromyalgia and ME/CFS. Click to read or pin to save for later.

12 Comments

  1. Katherine Walker Reply

    I think you said it well – that for the most part we don’t APPEAR “SICK”, but are hurting on the inside and nothing anybody says seems to help. I actually get tired of saying I’m so tired, and I’m sure my husband gets tired of hearing me complain about my aches and pains and tiredness. Just standing, sometimes, is a killer! The RA Doctor I went to was a quack and told me I didn’t have fibromyalgia, but I know I do, because all of my symptoms fit to a “T”.

    • Absolutely Katherine! I agree with all you say. I too gave up saying I’m tired. I guess for me, it’s kind of a given lol, so I was saying it constantly. So instead, I vocalise when it’s a better day 🙂 I find standing challenging too. Much more challenging that moving around actually. I think a lot of people would struggle to understand that. You know your body better than anyone. Intuition is a powerful thing and I always encourage people to listen to it.

    • Hi Gerri, I hope your brother finds this post helpful. Thanks for sharing.

  2. Katherine Walker Reply

    Thank you, Donna. Just having someone who “understands” is a wonderful thing to know. Geesh, I have a new friend! Thanks again!!!!

  3. Christine Rowland Reply

    Hi Donna, thank you ,
    I agree with all you say but you have missed out my most annoying problem
    FIBRO FOG.
    Some days I just cannot focus on anything,it’s awful
    I get really bad head pain and the Tinitus doesn’t help
    I cannot sleep with the constant noise.
    Not a day goes by that I don’t ask myself. Why Me. !!
    But we have to keep fighting, tomorrow might be a better day.
    I look forward to your next post and laughing at your clips. Thank you again so much.
    Kind regards, Chris Rowland

    • Hi Chris, thanks for your comment 🙂 Oh gosh, yes, the brain fog was my biggest frustration! I’m sorry you have tinnitus, I also have it but it’s thankfully not too bad. I love your attitude and I agree, we never know what the next day may hold for us 🙂 If you would like a laugh, I actually wrote a post about some of the silly things I’ve said and done thanks to brain fog. You can find it here

  4. Hi Donna, could you please give me some information about the stem cell treatment.
    Is there an age bracket to which one must fit. ??
    I am very interested in it and I’m so pleased that you have responded well to the treatment.
    It’s like you have been given your life back, how wonderful for you.
    Oh and I love reading your blog. Many thanks , Chris

    • Hi Chris! I have sent you an email about Infusio this morning as I thought this may be easier than replying here. Thank you for your kind comment, it honestly has and I’m so thankful. It’s lovely to hear that you enjoy reading my blog, this has made my morning 🙂

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