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.
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.
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. I
t 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.
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.
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
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.
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.
Thank you for this wonderful article. I very much appreciate it. It’s exactly what I feel.
I am grateful though, I do have a husband who supports me and is very compassionate. I am tired and in pain ALL the time, even when I’m sleeping. My life has changed. I can’t do much anymore. One task a day is more than my body and brain can take. People think I crave attention, or it’s all in my head. I have been mocked for years. I am at a point in my life where I have no energy to even respond or entertain some stupid opinions about my Fibromyalgia.
I wish that my significant other would understand that I want to be intimate but sometimes I just can’t. It’s not that I don’t love him, it’s just one of the things that negatively effects me the most. I wish it didn’t because it’s upsetting and negatively effects my relationship. Even though he says it’s ok i know he’s upset.
Also just talking about my illness gives me anxiety but I still want people to understand what I’m going through so it’s a double edged sword. And a lot of people feel awkward when you tell them these things.
I can empathise Rachel. It’s horrible how chronic illness affects every aspect of our lives. For me, communication has been key but I appreciate that’s not always easy <3
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
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 🙂
Hello Donna
If anything could explain our position to the outside world, it will be your writings.
At 5 feet ,11 inches tall and of queenly build, I get the puzzled looks and sometimes the outright rude comments. After 30 years experience of the usual tests, surgeries, alternative therapies and welfare tribunals I have found that the most effective defence to a comment received when out in the community is a lowered voice, a direct look and a murmured “it’s a neurological disorder”. If further questioned, which is unusual because most people are not all that interested, I launch into a detailed explanation. Sometimes, people are surprisingly
sympathetic. Sometimes, however, it is a choice between breathing and speaking, for me, as I find being out and about tiring in the extreme.
Kind regards
Anne
Thank you so much for your kind comment about my writing. I am sorry to hear you’ve had rude comments. So many people sadly lack empathy and understanding. I’m like you— I don’t waste my energy on those who aren’t interested or who I know won’t “get it”. I find that those who are interested and want to learn more often had no idea what it is like to like with invisible illness and are very sympathetic when I tell them.
I got my diagnostic in 2018 also 3 spinal surgeries in 2015 – 4 level fusion front and back of my neck
I’m a single mom 2 kids in college , as a head of household this last 2 years took a toll on my health
I’m barely working and currently have no insurance
Is a bad sensation of helplessness that only some people understand not able to sleep for days and the pain follows you every day I feel like a walking dead forgetting everything not able to clean or cook and if I do I be paying for it later
I’m depressed desperate my family thinks I’m depressed and lazy I become isolated I don’t get out of my home unless is really necessary spending my days in bed unable to think or move
I feel like a waist of a person
I just want to be normal and have goals
I am so sorry to read this. It’s such a horrible illness and steals so much. It must be so difficult not having the support of your family. I truly empathise 🙁
I wish people knew how much effort it takes even to attend doctor’s appointments. And waiting for hours for pain shots or echocardiograms, and VQ loung scans and on and on. I wish people knew when I get home from these outings I hurt so bad I can feel throbbing pain on every inch of my body.
Thank you:( Just got diagnosed been dealing with this for years didn’t know what it was.. feeling horrible daily for the last few weeks. Nothing helps trying to hold on to my faith .. it’s what O have. Blessings to you all
I wish people would stop giving me advice about excercise and I need to get out . It takes me all day to do the basics or some days it is hard just to get a drink take my meds and trying to get something to eat it feels like climing mount everest.
Hello everyone!
Haven’t written for a long time, but I love how we have undoubtedly become friends in pain and sorrow! I wish I could say something positive about this freaking disease but I guess I’m still learning the ropes myself! My husband would be considered disabled and is unable to do things on his own at all! Therefore, I bite the bullet and take care of his needs daily! Some day I expect to simply drop dead from this horrible exhaustion that he simply does not understand! I am in constant pain, and I can’t even read anymore because the words just don’t STICK IN MY HEAD! I think it’s important that researchers try to figure this thing out like they do for other diseases! Oh yeah, I also have ringing and/or buzzing so loud in my ear that I want to scream! I love you all, and believe me when I say with all sincerity I wish you the best! We must put on our best girly britches and GRIN AND BEAR IT EVEN THOUGH PEOPLE THINK WE LOOK GREAT! And with this I leave you with a prayer:
Dear Jesus,
Please heal all my friends reading this today and give them hope for a brighter tomorrow!
Amen
Hi Katherine, apologies for taking literally forever to reply to your comment (I have neglected this little blog since having my son in 2021). I’m only now seeing comments and catching up. Thank you for sharing your experience and kind words. I have definitely thought to myself “I’m so tired, I feel like I could die” when I was in the thick of it. You are a superwoman for caring for your husband while having this illness yourself. That is tough.
Thankyou so much for this information. I have been suffering with CFS since 1.5 years and I am so miserable I can’t even tell you. Nobody is listening to me they are all like “ it’s all in your head”, “ try harder”, “ you’re being lazy” blah blah and even doctor is recommending me psychiatrist every time. I’m really sick of all these . It has effected my life so much and I just feel like I’m just existing
I have been dealing with fibromyalgia for a few years and it’s very challenging. My body temperature changes a lot and at times I feel so cold and others around me just don’t understand it as they are not feeling the same temperature I am feeling. They can look at me and say stupid things like I am insane etc which really bothers me but I know what my body is feeling. There’s a lot of things that fibromyalgia sufferers go through from pain, anxiety, intolerance of lights , sounds and the headaches that people sometimes by looking at us think we are lying or being dramatic because we might not look like we are suffering on the outside but we know what we truly are suffering on the inside. What helps me out a lot is prayer, meditation on Gods word and natural vitamins and supplements and oils. The best advice is breathe and don’t surround yourself with negative people ever.
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.
Thank you for this wonderful article. I very much appreciate it. It’s exactly what I feel.
I am grateful though, I do have a husband who supports me and is very compassionate. I am tired and in pain ALL the time, even when I’m sleeping. My life has changed. I can’t do much anymore. One task a day is more than my body and brain can take. People think I crave attention, or it’s all in my head. I have been mocked for years. I am at a point in my life where I have no energy to even respond or entertain some stupid opinions about my Fibromyalgia.
I wish that my significant other would understand that I want to be intimate but sometimes I just can’t. It’s not that I don’t love him, it’s just one of the things that negatively effects me the most. I wish it didn’t because it’s upsetting and negatively effects my relationship. Even though he says it’s ok i know he’s upset.
Also just talking about my illness gives me anxiety but I still want people to understand what I’m going through so it’s a double edged sword. And a lot of people feel awkward when you tell them these things.
I can empathise Rachel. It’s horrible how chronic illness affects every aspect of our lives. For me, communication has been key but I appreciate that’s not always easy <3
Thanks for this post. I have forwarded it to my brother who suffers from this.
Hi Gerri, I hope your brother finds this post helpful. Thanks for sharing.
Thank you, Donna. Just having someone who “understands” is a wonderful thing to know. Geesh, I have a new friend! Thanks again!!!!
Hey Katherine, thank you so much for your kind comment 🙂
I couldn’t have said it better myself, thank you!
Thank you, Julie 🙂
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
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 🙂
Hello Donna
If anything could explain our position to the outside world, it will be your writings.
At 5 feet ,11 inches tall and of queenly build, I get the puzzled looks and sometimes the outright rude comments. After 30 years experience of the usual tests, surgeries, alternative therapies and welfare tribunals I have found that the most effective defence to a comment received when out in the community is a lowered voice, a direct look and a murmured “it’s a neurological disorder”. If further questioned, which is unusual because most people are not all that interested, I launch into a detailed explanation. Sometimes, people are surprisingly
sympathetic. Sometimes, however, it is a choice between breathing and speaking, for me, as I find being out and about tiring in the extreme.
Kind regards
Anne
Hi Anne,
Thank you so much for your kind comment about my writing. I am sorry to hear you’ve had rude comments. So many people sadly lack empathy and understanding. I’m like you— I don’t waste my energy on those who aren’t interested or who I know won’t “get it”. I find that those who are interested and want to learn more often had no idea what it is like to like with invisible illness and are very sympathetic when I tell them.
I got my diagnostic in 2018 also 3 spinal surgeries in 2015 – 4 level fusion front and back of my neck
I’m a single mom 2 kids in college , as a head of household this last 2 years took a toll on my health
I’m barely working and currently have no insurance
Is a bad sensation of helplessness that only some people understand not able to sleep for days and the pain follows you every day I feel like a walking dead forgetting everything not able to clean or cook and if I do I be paying for it later
I’m depressed desperate my family thinks I’m depressed and lazy I become isolated I don’t get out of my home unless is really necessary spending my days in bed unable to think or move
I feel like a waist of a person
I just want to be normal and have goals
I am so sorry to read this. It’s such a horrible illness and steals so much. It must be so difficult not having the support of your family. I truly empathise 🙁
I wish people knew how much effort it takes even to attend doctor’s appointments. And waiting for hours for pain shots or echocardiograms, and VQ loung scans and on and on. I wish people knew when I get home from these outings I hurt so bad I can feel throbbing pain on every inch of my body.
I hear you. There is so much that goes unseen. Sending you a gentle hug.
Thank you:( Just got diagnosed been dealing with this for years didn’t know what it was.. feeling horrible daily for the last few weeks. Nothing helps trying to hold on to my faith .. it’s what O have. Blessings to you all
I am sorry Kimberly. It is a lot to take in and process and comes with a whole mix of emotions. Sending love.
I wish people would stop giving me advice about excercise and I need to get out . It takes me all day to do the basics or some days it is hard just to get a drink take my meds and trying to get something to eat it feels like climing mount everest.
I’m sorry. It’s frustrating when people just don’t get it 🙁
Hello everyone!
Haven’t written for a long time, but I love how we have undoubtedly become friends in pain and sorrow! I wish I could say something positive about this freaking disease but I guess I’m still learning the ropes myself! My husband would be considered disabled and is unable to do things on his own at all! Therefore, I bite the bullet and take care of his needs daily! Some day I expect to simply drop dead from this horrible exhaustion that he simply does not understand! I am in constant pain, and I can’t even read anymore because the words just don’t STICK IN MY HEAD! I think it’s important that researchers try to figure this thing out like they do for other diseases! Oh yeah, I also have ringing and/or buzzing so loud in my ear that I want to scream! I love you all, and believe me when I say with all sincerity I wish you the best! We must put on our best girly britches and GRIN AND BEAR IT EVEN THOUGH PEOPLE THINK WE LOOK GREAT! And with this I leave you with a prayer:
Dear Jesus,
Please heal all my friends reading this today and give them hope for a brighter tomorrow!
Amen
Hi Katherine, apologies for taking literally forever to reply to your comment (I have neglected this little blog since having my son in 2021). I’m only now seeing comments and catching up. Thank you for sharing your experience and kind words. I have definitely thought to myself “I’m so tired, I feel like I could die” when I was in the thick of it. You are a superwoman for caring for your husband while having this illness yourself. That is tough.
Thankyou so much for this information. I have been suffering with CFS since 1.5 years and I am so miserable I can’t even tell you. Nobody is listening to me they are all like “ it’s all in your head”, “ try harder”, “ you’re being lazy” blah blah and even doctor is recommending me psychiatrist every time. I’m really sick of all these . It has effected my life so much and I just feel like I’m just existing
I am so sorry Riya, I truly empathise.
I have been dealing with fibromyalgia for a few years and it’s very challenging. My body temperature changes a lot and at times I feel so cold and others around me just don’t understand it as they are not feeling the same temperature I am feeling. They can look at me and say stupid things like I am insane etc which really bothers me but I know what my body is feeling. There’s a lot of things that fibromyalgia sufferers go through from pain, anxiety, intolerance of lights , sounds and the headaches that people sometimes by looking at us think we are lying or being dramatic because we might not look like we are suffering on the outside but we know what we truly are suffering on the inside. What helps me out a lot is prayer, meditation on Gods word and natural vitamins and supplements and oils. The best advice is breathe and don’t surround yourself with negative people ever.
Great advice Laurie. It really does affect everything and it’s hard when no one can see the true impact.