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.
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.
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.
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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