For people living with CFS / ME / FM, one of the most challenging aspects of the illness is trying to explain it to other people – and have them believe us!
Due to its invisible nature, CFS / ME, Fibromyalgia and other Spoonie illnesses are usually not able to be seen in any way by other people.
This then often calls into question the legitimacy of our claims that we have a physical illness.
Due to the recent positive feedback I received about my Letter To Partners of People With CFS / ME / FM, I have decided to write a similar letter to the general public.
Dear Friends, Family and the General Public from a person with CFS / ME / FM (or any other invisible illness),
I realise it must be hard for you at times to believe that we are truly ill when we look completely healthy.
It kind of goes against our human notion of “seeing is believing”, and also against our societal picture of how “sick people” should look.
That’s totally understandable that you would sometimes doubt our claims of illness, particularly when many of you may have no real knowledge of what chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (M.E) actually is.
Often when we don’t understand something, we also have a tendency to want to dismiss it because things we don’t understand can be a bit scary to our human psyche.
We understand all this because we, people with CFS / ME / FM, experience all this too.
Believe it or not, we sometimes look in the mirror and are amazed at how healthy we look, despite being in extreme pain and feeling extremely fatigued (among many other symptoms).
It’s sometimes like the ultimate cosmic joke for us that we still look so darn bright and healthy when inside we, quite literally, often feel like we’re dying.
And when it comes to wanting to dismiss something we don’t understand, I think most of us have gone through times in our early days of diagnosis when we wanted to reject the notion that we were ill; when we wanted to push on through the pain, fatigue, brain fog and many other symptoms and pretend that they weren’t there.
It’s the first stage of grief – denial!
We would like nothing more than to dismiss this illness from our lives, and it confuses us, frustrates us, and pains us to find ourselves with an illness that not only we don’t understand, but the majority of doctors and other health practitioners don’t either.
But, sadly for us, we can’t just dismiss it and make it go away. Because CFS / ME / FM are real, physical illnesses.
The Pain of Not Being Believed
Most of us have been dismissed at one time or another by a medical professional as being “stressed”, “depressed”, or even a hypochondriac.
I guess that’s why it hurts so much more when the people we love and trust also question the reality of our illness and whether it is truly a physical illness or “just” depression or a lack of motivation.
Most of the people I know with CFS / ME / CFIDS, including myself, were (and still are in many cases) very high achieving, motivated, driven people prior to the development of our illness.
The thought that anyone could think we are making up our symptoms to get attention or to get out of working or that it’s ‘all in our head’ is just … well, it’s insulting.
Not to mention heart-wrenchingly devastating.
Why devastating?
To have people we have trusted for years and years, who know us extremely well, turn around and question our sanity and our honesty is a betrayal at the highest level, and not something anyone would deal well with.
Betrayal
When I started this letter, I tapped into those emotions of betrayal that I felt early on in my experience of CFS / ME.
And this is how I was going to start the letter … until I realised it was not really what I wanted to say to you.
It was just my pent-up anger coming out, along with the memories of those early days when even one of my most-trusted doctors promptly handed me a psychiatrist referral after declaring I was obviously stressed and depressed.
In our more angry moments, where we feel most betrayed by the people and society around us, this is what we would sometimes like to say (or what I’d like to say!):
Right off the bat, let me answer a few burning questions for you that I know you’re dying to ask.
1. Yes, CFS / ME / CFIDS IS a real, physical illness.
2. No, it’s not all in my head.
3. No, it’s not that I’m just unmotivated.
4. Yes, I may be stressed and depressed, but they are a result of the physical illness and the effects it’s having on my life, not the primary symptom or cause.
It’s okay. We understand why you might think all these things. I mean, when the medical profession can’t even agree upon a suitable name for the illness, tell us what causes it or how to treat it, how are you, the public, supposed to take it seriously?
(Actually I think that came out as sarcastic rather than pure anger. The angry stuff may not be able to be printed! 🙂
Please Believe
It’s a challenge, I know.
But we, the people with this incredibly debilitating illness, are begging you to please realise we, in fact, DO have a very real, very serious medical condition.
All we’re asking is that you believe us in the same way that you would believe someone who told you they had cancer or multiple sclerosis.
They are not the same illnesses, but the illness we have is just as physically real as they are.
And if, in fact, it turns out there is a psychological component to the causation of CFS / ME, it would only be in the same context as in any of the findings of psychoneuroimmunology – that there is a psychological component to the causation of pretty much all illnesses, including cancer and multiple schlerosis (controversial, but potentially true).
Why it’s hard to believe us
I realise that there are a number of reasons that you find it hard to believe us when we say we have Chronic Fatigue Syndrome (CFS / ME), especially when we are walking around, talking, laughing and generally looking pretty good.
Please know that, rather than it being a compliment, when you say “But you don’t LOOK sick!!”, those five words are like daggers in our hearts.
When you say that, it implies that if we don’t look sick, we must not be sick.
And if we are, indeed, not really physically sick (as we are claiming), then that suggests, by default, that we are making the story up, it’s all in our imagination, and therefore, we must be a little mentally unstable.
I assure you, the main things that make us seem mentally unstable are a direct result of having unsuspecting people like you infer that we are mentally unstable and that you don’t believe a word we’re saying.
This hurts us even more when it comes from people we have known, loved and trusted for all (or part) of our lives.
In fact, it hurts like hell!
When our friends, family and work colleagues doubt the legitimacy of our illness, it’s like a betrayal to us.
The closer we are to the person who doesn’t believe us, the more betrayed we feel when they infer (or say outright!) that they don’t believe we are really sick – or at least not as sick as we say we are.
Consider how many times we have lied to you in the past.
Consider how serious you have taken us in other aspects of our lives.
Consider how much energy we used to have.
And look at us now.
Okay, we may not look sick, but surely you can see we’re not the person we were before.
Did that person sleep for days on end?
Did that person ever sleep in the middle of the day or all weekend? (okay, maybe sometimes, but only when we had a major hangover!)
Did that person complain of constant headaches, muscular aches and pains, digestive problems and other stuff?
Did we ever really complain at all about physical ailments?
Maybe we did. Because sometimes this illness creeps up on you and develops over a period of time.
Sometimes it doesn’t though. Sometimes it hits like a freight train, right out of the blue.
I guess when that’s the case, it’s more obvious that we’re sick, but sometimes people are really good at covering up the fact they’ve been hit by a metaphorical freight train.
None of us want to admit we can no longer do the things we could do in the past.
We don’t want to admit we can’t do the work we used to do, play the sport we used to play, volunteer at our kids’ school like we used to do, or be the active parent, friend, family member we used to be.
So sometimes we just push on and keep doing this stuff as if we’re still completely fine.
The thing that YOU don’t see is the mess of a person who, when safely at home and away from prying eyes, collapses into bed for hours on end.
Or the hot baths we have to take daily to keep us going, the massages we have regularly for the same reason, and the multiple pills, potions and treatments we fork out for on a regular basis just to keep functioning.
You might see us smiling, talking, laughing and even dancing when we’re out at a family function.
You DON’T see us in the days following that function when we’re laid up in bed or barely getting by.
You don’t see that because mostly that’s done in the privacy of our own home and you are, naturally, off living your lives when that’s going on.
Only the people who live with us get a real idea of what we’re going through.
And even then they can only see from the outside what we’re going through or listen to what we tell them about how we’re feeling.
If only you could get inside our body for a day
I have often wished that the people around me could just step into my body for a few hours so that they could finally understand what I feel like.
Because even the people who totally believe that we are ill and give us endless support are challenged by the invisible nature of this illness.
They desperately want us to be well and to feel better each day.
And when we get up out of bed (if we can!) each morning, they ask with great hope in their voice – “How do you feel today?”.
In that moment, we so want to tell them what they want to hear.
We so want to give them some hope and encouragement, and tell them that we feel a little better today, or just say “I feel good thanks”.
Sometimes I’ve been known to do that. (Actually, often I’m known to do it these days, but that’s for other reasons.)
We know you beautiful people in our lives just want us to be well.
We know you just love us so much and don’t want to see us suffering.
And we know that it’s wearing you down too, and you just want a little hope as much as we do.
But we also want you to know the truth.
And like so much in life, the truth often hurts.
The Truth
Because the truth is we are usually not feeling any better than we did yesterday, we often feel worse in the morning, so answering the “how are you feeling today?” question is rarely going to be a positive answer if we’re being honest.
And to the people we love the most in the world, we want to be able to be totally honest.
So we try to explain our symptoms to you. We try to explain the fatigue.
“It’s like my legs and arms are filled with lead, and something heavy is sitting on my chest making it hard for me to take a deep breath. It’s like someone has let the air out of my balloon”
“It’s like someone’s suddenly taken my batteries out”
“It’s like I’ve got the flu, just ran a marathon, and have a bad hangover all at once”
“It’s like I have a blow-torch in my head, creating a burning pain sensation – a feeling that is not adequately described by the word headache”.
“It’s like every system in my body has shut down and decided not to function, so I’m in pain, exhausted, can’t digest my food, have bowel problems, indigestion, and my brain can’t concentrate or even form words properly”.
We all try desperately at time to explain to others how we feel. And we fail dismally.
The only way anyone could truly understand is to literally step into our body.
It’s like anything someone else is experiencing – it’s impossible to truly know what they are feeling because we are not them.
And that is hugely frustrating when you’re watching someone you love and care for suffering greatly.
So what can you do?
More than you think.
But because this letter has already gone so long, I’m going to keep you in suspense for a day or two.
I have a list of ways you can help support people in your life who have CFS / ME / FM, but I have decided to make that “Part 2” of this letter as I think this is enough to absorb for now.
In the meantime, I’d suggest reading my earlier blog “A Letter To Partners of People With CFS / ME / FM”.
It gives you many ideas of how to support your friends, family, co-workers and acquaintances who have CFS / ME / FM.
In the next few days I will post Part 2 of this letter and give you some more ideas of how to do this.
Today’s Action Step
It’s been a while since I’ve posted in this 31 Day series hasn’t it? But I always have an action step. So today’s action step is to consider what you’d like to say to the general public and post it in the comments section or on Twitter or the Facebook Page. Keep it PG my friends. I know this is a touchy subject, but if our friends, family or the general public actually read this, we want to give them truly helpful information on how they can support us and make it a little easier for us to live with this illness that has much stigma attached to it.
I’m aiming to post the next blog – Part 2 – in the next few days, so stay tuned.
Keep Smiling
Louise
Related Posts
Day 1: 31 Days To A Better CFS Life – 3 Myths of Acceptance That Hold Us Back
Day 2: 31 Days To A Better CFS Life – It Is As It Is. Choose It!
Day 3: 31 Days To A Better CFS Life – 5 Ways To Control Our Thoughts When In Overwhelm & Despair
Day 4: 31 Days To A Better CFS Life – 6 Things You Can ALWAYS Do Despite CFS / ME
Day 5: 31 Days To A Better CFS Life – 7 Ways To Focus Your Thoughts On Something Uplifting
Day 6: 31 Day To A Better CFS Life – Being Present – 7 Simple Mindfulness Techniques To Help Manage CFS
Day 7: 31 Days To A Better CFS Life – Learning To Ask For Help – 5 Simple Tasks You Can ‘Outsource’ To Help Manage CFS
Day 8: 31 Days To A Better CFS Life – Discover Podcasts – 5 Steps To Finding & Listening To Good Podcasts
Day 9: 31 Days To A Better CFS Life – Listen To Your Body. I Am Today!
Day 10: 31 Days To A Better CFS Life – 10 Ways To Nurture Yourself & Fill Your Bucket
Day 11: 31 Day To A Better CFS Life – 5 Ways To Combat Spoonie Mother Guilt on Mother’s Day!
Day 12: 31 Days To A Better CFS Life – My 5 Fave Ways To Connect With The Online CFS / ME Community
Day 13: 31 Days To A Better CFS Life – How & Why Audiobooks Are A Great Illness-Management Tool
Day 14: 31 Days To A Better CFS Life -10 Top Audiobooks I Recommend
Day 15: 31 Days To A Better CFS Life: 5 Tips For Getting Tasks Done When You Have CFS / ME
Day 16: 31 Days To A Better CFS Life – What Are You Struggling With Most Right Now?
Day 17: 31 Days To A Better CFS Life: What Are You Doing WELL In Managing CFS / ME / Fibro? What Are You NOT Struggling With?
Day 18: 31 Days To A Better CFS Life – 3 Things I Struggle With At The Moment & How I Manage Them
Day 19: 31 Days To A Better CFS Life – 101 Ways I Manage CFS / ME & Electrosensitivity Pain
Day 20: 31 Days To A Better CFS Life – 5 Benefits Of Writing To Help Manage CFS / ME
Day 21: 31 Days To A Better CFS Life – Gratitude is Healing – 5 Ways To Practise Gratitude
Day 22: 31 Days To A Better CFS Life – A Letter To Partners Of People With CFS / ME
Day 23: 31 Days To A Better CFS Life – 7 Healthy, Safe Ways To Release Emotions
Day 25: 31 Days To A Better CFS Life – Letter To The General Public Pt 2 – How You Can Support Someone Who Has CFS / ME / FM
Annys Blackwell says
Hard-hitting, Louise, and straight from the gut!
It’s not only that the great public at large don’t understand or accept it. What makes this condition more difficult than it needs to be, and what I’m working on, is truly believing I’m ill. I have always found it difficult to identify and accept my own feelings, physical and emotional. Every so often, as I expect we all do, I feel fine. And I think, more often than not, ‘Oh, maybe I’m not ill after all!’ (I’ve lived with it for almost fourteen years) Accepting that I’m ill is a major issue, and I’m sure that once I can achieve it, it’ll help.
It’s all a massive learning experience. But knowing that other people are in a similar boat helps massively.
lots of love xxx
Louise Bibby says
It’s a fine balance isn’t it Annys, between accepting we’re ill and giving up.
My 1st & 2nd blogs in the 31 Days To A Better CFS Life series are actually all about acceptance, and looking at the importance of it and the myths around it (ie that acceptance = giving in, and so on). Here are the links – Day 1: 3 Myths of Acceptance That Hold Us Back & Day 2: Choosing Your Illness.
I think I’ve gone through a number of stages of acceptance, and in some ways I think I have to re-accept my health condition every day (sometimes every hour!), but when I first accepted that I was ill, I found I started to improve in certain ways. I think it gave me a sense of peace. There was no doubt I was still aiming to be well again, but the “what’s so” right at that time was that I had CFS/ME and I was very ill. To just finally acknowledge that, the emotions around it, and the impact it had on my life, gave me a sense of freedom to then stop fighting the ‘facts’ of the matter. But I agree, it’s an almost never-ending struggle to accept that our bodies could be experiencing all these weird, often-unexplainable symptoms, and that it’s gone on 14 or 21 years!!
Thanks so much for sharing your experience with us. It IS definitely a massive learning experience. I’m forever learning, falling down, getting up, and learning some more! 🙂
Keep Smiling
Louise 🙂
Annys Blackwell says
I just realised yesterday that because 99% of my family don’t seem to believe I’m ill (the 1% had M.E. thirty and twenty years ago – one has forgotten how it felt, the other had a horrible time, and has no problem understanding how difficult it is for us now), I’m struggling to believe I am, too. There have been too many times in my life that I wanted something or agreed with something, and someone disagreed, so I had to back down. So now I’m having to constantly encourage myself and back myself up, and when I get angry about how crazy it all is, put on an isochronic track or two and soothe myself down. It is about finding out about my strength and resources. I wonder if that’s true for other people.
I’m slowly working through these articles – there are some splendid ones! Thank you, Louise. <3
Louise Bibby says
Firstly, Annys, I’m so glad you’re getting a lot of value out of the articles. That’s what I write them for, but it’s always nice to get feedback that they’re serving their purpose (and not just disappearing into the ether!). 🙂
Secondly, I can see why you’ve found it so difficult to accept your M.E., as there would be such a pull from the people around you to just keep going and pretend there’s nothing wrong. It’s so hard when the people around us just don’t get it, and it sounds like you haven’t had much support at all. I’m just glad you found my blog and FB page, and the community that comes with it (are you on Twitter too? I can’t remember sorry. There’s a great #mecfs #spoonie community on there). Sometimes when we don’t have the support in our ‘real’ lives, the online world is such a balm to us. I find it so anyway!
Keep commenting on any blogs you particularly get value from. I love hearing your feedback. And don’t worry, I’m definitely getting the comments!! I seem to have missed seeing this one for a few days because I’ve been rearranging my email inbox that was incredibly cluttered, so I missed the notifications. Sorry about that!
Keep Smiling (and know that the Guru Crew are always here to support you – albeit a little late at times! 😉
Louise