The other night as I switched on the TV I encountered the following exchange on the sitcom Benidorm:
“My mother’s got MS.”
“Sometimes think I’ve got that.”
“You think you have MS?”
“Yeah, sometimes. I read about it in a magazine. A lot of people think they’ve got it don’t they?”
“Do you mean ME?”
“Oh, I don’t know. Which is the one where you can’t be arsed to do owt?”
“I think you mean ME.”
“ME, MS, it’s all lazy buggers cracking on there’s something wrong with them, in’t it?”
Now I would hazard a guess that many MS sufferers found that joke amusing, safe in the knowledge that most people recognise MS as a genuinely debilitating disease, but many people with ME will not have been laughing. This is not because ME sufferers can’t take a joke, but because they know that many people watching that episode will share the character’s view that ME is nothing more than laziness, tiredness or benefit fraud.
You see the meaning of the joke is somewhat ambiguous: is it portraying the woman’s ignorance for failing to recognise both MS and ME as serious conditions, or she ignorant for confusing MS with something as seemingly trivial as ME? The truth is that every ME sufferer I know has had almost that exact same conversation at one time or another.
“ME? Isn’t that the one that makes you tired?”
“Oh, so you’re depressed then?”
“I get a bit of that sometimes.”
“You should see me when I come home from work in an evening.”
“I hate getting out of bed in the morning too.”
“We all feel tired you know but it’s no excuse for not doing things.”
“I read in the paper that you just need to do some exercise and you’ll be fine”.
“My nephew’s neighbour’s auntie’s plumber had that. She cured herself by balancing a turnip on her nose by the light of the harvest moon.”
Ok, so I may have exaggerated that last one a little bit (though not by much) and if you felt the ground shake a moment ago it was just the collective nod of the entire ME community as they read those words. If I had a pound for every time I’ve heard comments like these I would never need to earn another penny or claim any benefits ever again.
So if you’ve heard that ME suffers are tired or lazy, if you were unaware that ME and MS can be equally debilitating, or if (heaven forbid) any one of those statements has ever passed your lips let me clear up any confusion once and for all: contrary to popular belief ME ISN’T TIREDNESS.
I’ve been an insomniac most of my life so I know what tiredness is. I’ve performed concerts, played sports, aced exams and worked twelve-hour days off no more than two or three hours sleep, so believe me when I say that ‘tired’ wouldn’t stop me.
If you’re bone weary by the time you get home from work in an evening YOU DO NOT HAVE ME. Being tired after a hard day’s work is healthy and normal.
If you’re exhausted and achy after an hour at the gym YOU DO NOT HAVE ME. Tiredness after physical exertion is healthy and normal.
If you feel sluggish from a diet of takeaways and junk food, you find it hard to get up for work in the morning or you spend your weekend catching up on lost sleep YOU DO NOT HAVE ME.
You cannot get a ‘bit’ of ME any more than you can be a ‘bit’ pregnant or have a ‘bit’ of Motor Neurones Disease. Any tiredness caused by overwork, insomnia, poor nutrition, or strenuous exercise is not ME, your body is behaving in a perfectly normal way to the demands and stresses you are placing on it.
Of course fatigue is often a feature of ME in the same way that it is a feature of any illness; patients with cancer, Parkinson’s, MS or even the common cold will experience a degree of fatigue as a result of their body’s inability to function normally. That doesn’t make it the only or even the main characteristic of the disease.
A defining characteristic of ME is Post-Exertional Malaise (PEM); this poorly named phenomenon does not describe the immediate tiredness a healthy person feels after exercise but a severe, progressive and measurable worsening of symptoms over hours or days following even minimal exertion. For patients with severe ME any physical or cognitive exertion, however small, can be enough to trigger severe and potentially life-threatening relapse.
The reason I am too sick to work or leave the house is not because I am tired or depressed (though depression is no less valid a reason); it is because of seizures and blackouts and orthostatic intolerance that mean I cannot spend long out of bed without suffering complete collapse.
When I do too much I do not feel tired, I experience hours or days of transient paralysis, blindness, muteness, cognitive dysfunction, muscle spasms, migraines, vertigo, balance problems, vomiting and hypersensitivity to light, sound and touch.
When I talk of good and bad days I do not mean that I am ill only some of the time. I have felt ill every second of every day for the last ten years without a moment’s respite. The pain in my muscles, bones and joints never goes away and I can count on one hand (with fingers to spare) the number of days in that time that I have not had a headache.
When I talk of being in remission it does not mean that I am almost better and will be back to normal soon, it simply means that things are stable at the moment and I have not experienced a significant relapse in a while.
I have been ill for so long that I no longer remember what healthy feels like. It scares me to think that perhaps I never will. So if I fail to laugh at jokes that poke fun at ME, please don’t hold it against me; it is only a matter of time before ME (like MS before it) is finally recognised as the serious debilitating disease I know it to be. When that day comes, I’ll laugh as heartily as anyone at jokes about ME, safe in the knowledge that no one really believes them anymore.
Over to you:
Have you ever encountered these kinds of attitudes towards ME?
If you have ME, did you (like me) share any of these misconceptions before experiencing ME for yourself?
If you don’t have ME, does anything I have written here surprise you?
What is the most insensitive or ridiculous thing anyone has ever said to you about ME?
So true…so true.
I had to take a break from reading this half way through! I know all those comments far too well and I have to admit, there was some fury rising up in me! Thanks for sharing this!
I can almost guarantee that anyone with any chronic illness could add at least a dozen more to the list. I had a hard time choosing which to include myself as there are just so many I couldn’t list them all.
Thankfully for me my sisters friend had ME as a teenager so I was aware of the illness and its severity before myself being diagnosed with the illness years later.
Someone actually shook me once, joking “a good shake is all you need to snap out of it”, she was so lucky I didn’t puke on her as I was fighting a migraine and nausea at the time along with the normal exhaustion. I have also been advised of the various potions and cures acquaintances distant cousins found useful for illnesses no way connected to ME but when I didn’t pursue some of the avenues the person/people who suggested the wonderful cure were miffed I didn’t take their suggestions on board.
A good friend who herself battles a chronic illness warned me when I was first diagnosed I would have to bite my tongue many a time and I quickly learnt she was right. There are so many misconceptions and theories floating about it can be difficult but we as patients have to share our voice, for ourselves, for those who are too ill to use their own voice, to raise awareness, to remind people of our limitations and the disabling qualities of our illness. It is a very real, very destructive illness.
I read a previous post by you in relation to cancer and I myself wondered many a time if I would be better off if I had cancer instead of ME, I would have a distinct path to follow, people would understand the illness and what I was going through, that said, I understand what a cruel and horrific path cancer leads to, its just if I had it I would be better understood instead of being labelled as “a bit tired”.
Puking on her might have been just desserts for having the audacity to shake you.
I am amazed I have any tongue left I spend so much time biting it. Misconceptions about ME are just so pervasive. I almost prefer it when people’s comments come from genuine unkindness because at least then I feel more justified in giving a brutally honest reply. So often people say completely the wrong things while meaning to be kind.
I have done the same things, negotiating in my head if I would rather have cancer/lose a limb/become blind etc. etc… Not only because these conditions are more understood by society, but because they are somehow more tangible; restrictive in specific ways. Not to make light of any injury/disability/illness, but if only I had something that restricted ONE area of my life – if I lost an arm, I couldn’t do a multitude of things, but at least I could earn an income, be alert during conversations with friends, know that I would be able to turn up to events and not cancel last minute due to the unpredictable nature of the CFS…. *end rant!
It really is a case of “if you don’t have it, you don’t get it!”. We as patients have to keep raising awareness by showing friends and family what it is like to live a day in our shoes and even that is hard! When I miss family events people often raise an eyebrow saying “But you just had to turn up, you didnt have to do anything when there”. They don’t realise “the turning up” is as hard as the “being there” and sometimes I have to be blunt! After all, to get to an event, to listen, to concentrate, to get home, would leave me at the summit of Everest with no oxygen. Someday ME/CFS will be fully understood, someday…
Oh to be simply ‘tired’. I’d give my right arm to be able to go and do a high impact aerobic workout for an hour after a busy day at work and then feel ‘tired’.
I CAN get out and do things a bit, but I find folk see me drinking coffee or whatever and can’t at first see the limitations I face. I look normal!
However, I now use a mobility scooter for distances over about 30 metres at a time – because this means I can avoid the crashes and keep going day after day.
So I met a good friend today and she greeted me with a comment I found hard to fathom. ( She had recently seen a photo of me doing dog agility from my scooter – check out http://abilityforagility.blogspot.com ) Anyway she commented that she couldn’t BELIEVE that any one of OUR AGE would be doing agiltiy from a mobility scooter!! I felt the comment was about HER and how hard she found it to deal with some-one HER age using a scooter.
I’m afraid my reply was “Bloody Hell, what do you want me to do GIVE-UP? It’s either do it like this or not at all!” Anyway, thankfully she was quick to agree that of course I shouldn’t give up and to say well done for attempting it…..
She’s a good friend and I know it was just one of those comments that came out a bit wrong, but often I think folk feel uncomfortable with us (their previously fit and able friends) being long term ill. It’s not easy from either side of the table. This illness creates differences between us and our friends that we’d rather not have to acknowledge.
PS I should add, being the type of person that can equally well stick her foot in up to her neck, I have no grudge to my good friend for this comment. I know she supports me fully in my ways of coping….. Just thought the comment (which only happened today) was relevant to the topic. 😉
I guess it is hard for people to get used to a friend suddenly needing a wheelchair or scooter. I often wonder how I would cope with it if the roles were reversed and what stupid things would have come out of my own mouth at times. It isn’t like we resort to mobility aids for fun however. I know I found it incredibly hard to accept the need for a wheelchair and hated my friends and family having to see me in it so comments like your friend’s would have been the last thing I needed to hear.
I’m glad your friend does her best to be supportive in other ways though and that your friendship is close enough for you to overlook a thoughtless comment.
I’ll admit that before I started reading your blog, I didn’t really know all that much about ME (and I still don’t, really). I knew that there was more to it than simply being tired. I assumed that the way it affects people must be pretty severe because it’s a chronic illness, but I didn’t realse just how bad things could be. Thank you for posting this, I feel I’ve learned something today.
Like many people I knew very little about ME myself before I was diagnosed with it. At first I thought the diagnosis must be wrong because what I was experiencing was so much more serious than anything I’d ever heard about ME. If through blogging I help even a few people understand a little better about the illness without them having to learn the hard way like I did then I’ll be very happy.
When my partner and I were buying our flat we had a meeting with our mortgage advisor about critical illness cover. I had to declare on the form that I had ME and when I said this to the advisor she responded with ‘oh that’s that yuppi flu thing isn’t it’! I could have hit her (had I had the energy). When I said ‘No, it was far worse than the flu’ she said ‘oh but doesn’t it mean you’re just tired all the time’…makes me angry even now, 2 years on. I wholeheartedly share your feeling that you no longer know what healthy feels like and hope that it won’t be too long before the world wakes up to the severity and seriousness of ME. Surely the fact it is so debilitating and there is no cure and the actual cause of it is still unknown should raise alarm bells and awareness rather than making it maligned and misunderstood. Makes no sense to me, but then I would say that wouldn’t I, I have ME, I’m just tired….
A few weeks ago my housemate said that a friend of his would be popping over. He went on to say that she has MS. My immediate thought was hopefully I will be well enough to meet her & if she chooses to bring up MS in conversation then hopefully I will be able to offer an understanding ear. Then he said … “so don’t go on about ME tonight as she has MS & that’s much worse”.
Oh my God, that’s terrible! I sympathise as I’ve heard that a lot. “Oh M.E.? I was confusing it with MS, that’s the serious one”
Wonderfully well written, and sadly soooo true. My pre-teen and I both have M.E…. and if we think it is bad the comments we get as adults, I find the insinuations towards teenagers is far worse :(. “I can never get my teen out of bed either, she’s so lazy she’d never get off the sofa if I didn’t make her, all she wants to do is sleep all weekend and chat to friends on skype, she’d gladly miss all her exams too if she could” etc etc etc. (My daughter is so ill that she has only done 4hrs of school in 8 weeks). I try to explain that she gets too tired to eat (and nearly dropped off the weight chart at the hospitals) – oh yes their teen is a picky eater too and won’t eat what she’s given most of the time. There is no winning. I give up. If only they could witness what a nightmarish struggle we go through each and every day they may think differently and maybe reach out to help. Maybe. I live in hope. Thank you so much for your article and shedding light on the situation in such a tangible way to the non-believers…. and for making it so identifiable for those of us who have it.
One of the things I am most thankful for is that I made it to higher education before I got sick. Far too many children face not only missing out on their childhoods but accusations of school phobia to boot. And when parents are told they just need to show some tough love to their dangerously ill kids it makes me want to scream.
Gentle hugs to your daughter and thanks for sharing such an important and often overlooked issue.
I’m afraid I feel compelled to comment as I’ve seen things from both sides now (ME and then MS diagnosis) and I can honestly say that there was no hilarity on any of the MS forums that I belong to, as a very common symptom of MS is debilitating fatigue (the main reason why people have to stop working).
There are a lot of people with MS who work and live almost ‘normal’ lives and then there are those who need 24 hour care. It is a disease which is very specific to the individual.
The MS Society estimates that there are about 100k sufferers of MS in this country and the ME Association estimates that there are 250k ME sufferers. There is such a huge disparity in the treatment options available.
Since I was re-diagnosed with MS, I have been referred to balance, speech and continence clinics as well as having neuro-physiotherapy and counselling. I have been prescribed medication for fatigue and neuropathic pain.
For all intents and purposes, when I had an ME diagnosis, I spent 9 years ‘stuck in a cupboard’ with regard to treatment options.
What worries me most is that the symptoms of ME and MS can be very similar and that when someone is diagnosed with ME, most GPs are happy to accept the diagnosis and become reluctant to offer further testing. Most GPs will only see a handful of MS patients in their career and will be resistant to making a referral to a neurologist (as was mine) but when you consider that approximately 40% of ME patients are misdiagnosed, this is quite scary. I would hate to think that someone is deprived of treatment which may not cure, but could certainly slow down progression of their disease (if in fact it does turn out to be MS).
I can understand the anger and frustration that is caused by the mismatch in treatment between ME and MS and I will never believe that it is justified but please, don’t encourage us to fight amongst ourselves when we should be fighting together.
Please don’t misunderstand me. I was not trying to dismiss MS as being anything other than a serious debilitating disease. I know MS ruins lives and having lost friends to both conditions I was not trying to claim that either one was more or less serious than the other.
I know there is still a lot of stigma attached to MS and it does not receive the full recognition it deserves but if you were to ask the majority of people (especially doctors) they would acknowledge MS as being serious while still believing ME to be trivial or psychosomatic.
One of the writers of Benidorm wrote in his blog that he’d had letters from MS sufferers who thought the episode very funny but I am aware this would not be true of all people with MS. I am sure many of the misconceptions listed in this post are also familiar to people with MS. I do not begrudge for a moment any recognition or funding that MS receives as I know it is still precious little and was very hard won but ME is still one of the most underfunded and misrepresented illnesses there is.
I apologise for any offence I may inadvertantly have caused, this was not my intent – I specifically stated that MS is a serious debilitating disease and I’m sorry if my focus on ME appeared to undermine this fact.
One that left me speechless was “you’re lucky you’re so laid back you don’t mind sitting about doing nothing all day”. My son (33) gets endless abuse for using his blue badge “you’re young you can’t be disabled”.
I think a lot of people view chronic illness as an extended holiday. A lot of people have told me I am lucky I can do what I want all day not realising that I am often to ill to do anything at all. Being off work loses its novelty value very quickly when you aren’t well enough to fill the time with other things.
I have never understood the age issue either. People of any age can be disabled. Carers in particular often tell me I’m too young to need care or that its a tragedy when young people get sick but it wouldn’t be any less terrible at any age.
What a lot of people don’t realise is that a good proportion of people who get ME are really active people; working mums, endurance athletes, etc. When you go from that to being able to do almost nothing, it’s even worse
The most insensitive, I’m not sure it’s the most insensitive, but the newest. A tech guy was here replacing my hard drive. He knew from a previous visit I had FM-ME. He inquired, kindly, how I was today. Then proceeded to tell me how since he knew all about the illness. Aargh.
Thankfully I do not have ME. What surprised me was this ‘For patients with severe ME any physical or cognitive exertion, however small, can be enough to trigger severe and potentially life-threatening relapse.’ I have to say I hadn’t realised ME was life-threatening (which is silly because I had a cousin who died when her MS wasn’t any worse than ‘normal’).
I read this the other day http://www.medicaldaily.com/articles/16640/20130618/fibromyalgia-blood-vessel-constriction-deep-tissue-pain-skin-issue.htm. I know Fibromyalgia isn’t ME, but I thought the reference to psychosomatic illness, and the science about pain endings in the skin, might have a possible relevance.
Quite a few of my readers have fibromyalgia so I am sure they will find your link interesting, thank you. It is another poorly understood and much maligned condition.
Few people realise that people have died from ME. In fact when I was diagnosed several doctors went so far as to tell me it couldn’t be fatal. The death rate is relatively low; so low, accurate morbitity figures are not available but are estimated at around 3%.
There have been several high profile cases in recent years of deaths from ME of people in their twenties and thirties or even in their teens. Often medical negligence has contributed to these because of the stigma and misunderstandings that still exist even within the medical profession. Do an internet search for Sophia Mirza, Emily Collingridge or Alison Hunter and you’ll see why it is so important that this message gets out to as many people as possible.
yes, this piece has been widely spread about in the media. Sadly it seems its more of an advert for the company who manufacture this new up coming drug than a cure for FM as the research was only done on a very small group (23-24 people from memory) & they completely ignored other well established research done by places like Stanford that had already demonstrated that FM is not phychosomatic & has neurological causes. Articles (or is it an advertorial?) like this are also part of the problem as healthy people see them & say to their friends with that chronic condition”Have you seen this, they can cure it now, have you tried it?” or worse “There’s a cure now, why aren’t you better?” This research may be the beginning of something that will help FM, but as it ignores so many facets of it, I will be surprised if it is the miracle fixer that they say it is. Welcome to the world of someone with a chronic debilitating condition 🙂 The politics, snake oil & false hopes are rampant & meanwhile we wade through the minefield looking for what may actually help us & have to deal with all the other stuff & attitudes discussed here as well.
Shocking script for them to broadcast.
My best (worst) is ‘ You eat too much tuna’!
And I thought I’d heard everything…a referance to the toxins in our sea water possibly? It seems everybody has a theory, some stranger than others.
So very well written, thank you.
I would like to say, however, that depression is as serious an illness as ME – even if it manifests itself very, very differently. The idea that one can be ‘just depressed’ is as much a misnomer as ‘having a bit of ME’. It is also an illness that can be extremely debilitating and fatal; it is not comparable in severity to tiredness.
I completely understand where you are coming from, though. I’m sure I’ve said something along the lines many a time when trying to get my point across that ME is not in related to depression any more than another chronic illness might be.
I was not trying to denegrate depression in any way and nowhere in my post did I suggest there is any ‘just’ about depression. My point was that people often mistake ME for being the same as depression when in fact they are completely separate conditions. Confusing any disparate conditions as synonymous (whether ME with depression, or lung cancer with emphysema) leads to patients being denied the treatments they need, or worse receiving treatments that are harmful to them.
As I have said on my blog before, mental health conditions are just as real as any other condition and equally deserving of compassion, respect and proper medical care. I would never dream of claiming otherwise. Like with many chronic conditions ME patients can develop depression as well but this is a separate diagnosis that needs to be treated accordingly. Mistaking one condition for another does neither patient group any favours.
I have edited the line I think you may have taken issue with. I hope that clears up any misunderstandings.
Hey, I nominated your for an award, check it out here: http://viewfromawalkingframe.wordpress.com/2013/06/28/the-liebster-award/
I was referred to a therapist who suggested ironing would be my cure! Not quite sure which bit she thought would help – the heat, the smell, the standing up without losing my balance & burning myself… & they wondered why I only had 3 sessions!
It’s interesting to read all this because I’ve had a few friends with ME but the way they’ve been with it seems so different. One friend I could see was seriously ill with ME and that was the first time I think I’ve ever seen it and really believed it. But I have another friend where she comes across from the other point of view… the ‘just lazy’ and ‘victim’. I guess, like mental illness, it’s something which is unique to each individual in how it manifests itself, albeit with some common effects.
ME covers a whole spectrum of illness from people who are able to work at one end to people who are tube fed and paralysed at the other. Even at the same level of severity, the symptoms experienced by every individual will be different. Where ever someone lies on the spectrum, what their healthy friends see will only be the tip of the iceberg. I am at the more severe end of the spectrum yet for short periods I can smile and chat with friends and they wouldn’t know there was anything wrong to look at me. It is only when visitors leave that I collapse and the more severe symptoms become obvious.
If you met me when I was out having a coffee with a friend you would say I looked “well”. Fact is I probably used a mobility scooter to reach the coffee shop, and am quite likely to go home and sleep afterwards.
So unless the person is very obviously ill, the not-totally-floored-but-not-well-either level is difficult to understand. I can look quite normal for an hour at a time, provided there is nothing physically exerting happening….. but if I do anything much activity wise, I’ll be ill with flu like symptoms the following days! Tis hard to explain simply without seeming like a hypochondriac..
I’d go back & see that same friend the next day or later that night & see how they are if they will let you. She may have rested before seeing you & we all “put up a good front” when we see friends. I’ve just had an overnight stay visiting family. I booked into a hotel near them as it is now impossible for me to do the round trip without collapsing. They live a few hours away from me. I struggled through it as I haven’t seen them for 6 months & it was wonderful, but I am still suffering from motion sickness from driving about in cars while I was there 2 days after getting back, my balance & tremors are worse than usual & the headache I had before I left last week that won’t go away has ramped up several notches so I feel like screaming. You try to act & look as normal as possible as all this never goes away, it just varies by degrees. If you’d seen me pushing my great niece about on my walker on Sat you probably would have thought I was fine, but a closer look as the day went on would have let you see the cracks in the facade 🙂
My worst was probably the rheumatologist who, when I was describing my inability to go grocery shopping anymore, said that she didn’t believe in letting it stop you from doing anything you want to do. “If you want to take skiing lessons, take skiing lessons,” she said.
I must admit that before I got sick, if I had met someone who told me they had “chronic fatigue syndrome” and told me about the symptoms, I would have thought they were a nut case or hypochondriac. I wouldn’t have believed someone could really have so many different symptoms, or that they could be seriously ill and not look sick. I would have thought that if it were really a debilitating disease, they wouldn’t have to try to convince people it was a debilitating disease, and that I would have heard about it, like cancer or AIDS. I remind myself of that when people I know react that way, or when they get that expression that looks like they’re working hard not to roll their eyes.
When I first became bedridden it took more than two years of fighting the system to get a proper care package in place. Because of this quite a few people assumed I must be exaggerating how ill I was on the assumption that if I was really so ill, surely someone (doctors or social workers) would be doing something about it. It was a shock for me to learn that even when you are entitled to care you often still have to fight for it.
Like many people I knew very little about ME before being diagnosed and as you say, I assumed if it was serious it would be all over the media and everyone would know about it. When I first began to read up on it I couldn’t believe that such a serious illness could be so misrepresented. Sometimes the only way I can remain gracious in the face of other people’s ignorance is to remind myself that had I never fallen ill myself I would no doubt still believe the very same stereotypes they do.
I have fibro, similar problems, too many people being looked down on for “invisible illnesses” I don’t claim any benefits because I won’t go through all the hassle with the system handed out to me by people who have no understanding of what we go through.
When I was out in a wheelchair one day at the shops, someone who I hadn’t seen for 15 years (& didn’t know anything about my health) came up to me & said, “So you’re having a lazy day today are you???” Even in a wheelchair people were skeptical because I didn’t look disabled. Now that I’m well enough to walk I face the problem that my illness is invisible. People see a snippet of your life when you’re out, but they don’t see the many hours I spend horizontal before & after, & the fact that even when I’m fortunate enough to be doing something I am battling many symptoms at the time. . I’m loath to even mention M.E sometimes because of the lack of understanding. Thank you for sharing this post.
When I was still able to work part time there were times I was coming in from work so ill that all I could do was go to bed until it was time to get up for work the next day. I wasn’t managing to shop, cook, clean, watch TV or socialise and could barely even make it to the bathroom but for the three hours a day I spent at work, none of my colleagues had any idea there was anything wrong with me. When a relapse left me off work for three months it was a genuine shock to my workmates to discover I’d been chronically ill the entire time they’d known me.
I to suffer from ME and yes it sometimes infuriate me how little people know about it, but more important how little people recognise it as a serious illness. I try and avoid reading about it in the press as it just gets my blood boiling. I do however feel at peace with it all to some extent in that I just try and stay positive and take each day at a time. It’s hard my kids are small and demanding and sometimes I just feel like running away as I can’t be the mum I wanted to be or have the life I was looking forward to. A very big part of me has accepted this new life snd Im msling the most of it even when i still need to be in bed every day in order to cope. It’s so hard when others don’t get it, but then I often remind myself just how mystified I still get with the illness myself five years down the line. We all have such a different journey with this debilitating disease and its so very tough. It’s great that you spoke out!!! Well done for a great post where people will get further insight into the condition. I wrote something during the ME awareness week on my blog and I think even if you can inform one more person about ME, it’s a job well done. Thanks for sharing this with us and keep believing that things will get better. Warm wishes xo
The most ridiculous/insensitive thing anyone has ever said to me since being ill is “You just fear exertion”. I resisted the urge to remove his eyeballs with my thumbs and calmly explained that when your ability to function at all or have any quality of life is dependent on being hyper-organised about how and when you expend energy, you have to be extremely careful.
This is not a fear of exertion. It is a justifiable need to not destroy myself on an ongoing basis by intentionally damaging an already dysfunctional body. I pointed out that, for me, ‘exertion’ could be something as simple as blow-drying my hair or cooking a meal, and the fact that he only saw me on the occasion that I was up and about, looking suitably not-sick, didn’t mean that I was in good health at the time.
Needless to say, I no longer associate with that person as I choose not to waste valuable energy dealing with willfully ignorant and judgmental people. I feel I need to explain that this was someone who I had talked to at length about the nature of my condition, an intelligent person who was perfectly capable of understanding this information. He simply chose to view my world through stupid-tinted lenses so I simply chose not to talk to him any more.
Whenever I encounter misinformation about M.E. or have an opportunity to educate people who are willing to listen, I do my best to offer facts and impart knowledge. This illness is not only comparatively invisible in physical terms, but also in cultural terms. I feel it’s worth making an effort to try and change that, even in small ways, one person at a time.
Sadly, now matter how carefully you try to explain or how much evidence you present there will always be people who are so firmly convinced ME is pychosomatic they will not be persuaded by any argument.
The trouble with having an illness that is all too often viewed as attention seeking, the more you attempt to re-educate someone the more attention seeking you seem to them. Unfortunately it is a no win situation and sometimes we just have to accept that some people are not open to the truth and do what we can to inform those who are more open-minded instead.
I was diagnosed with MS 20 years ago after countless years going back and forth to the doctor to try and understand what was actually wrong with me. I had almost given up and believed I was a hypochondriac . However, when I was told the diagnosis was MS the consultant also added ” I see you we’re diagnosed with ME some time ago” I was shocked. My GP had not told me. I have since found that some doctors still do not recognise ME as an illness. It’s shocking. My prognosis for both is mild, but there so many tasks I used to do that I can’t anymore. The most uneducated comment I have had is ” oh it’s probably your age, you are getting older you know”. Grrrrrr.
When I turned 30 last year an old friend suggested that what I thought was illness might be my unrrealistic expectation that I should still feel like I did when I was twenty. Unless being housebound and wheelchair dependent is normal for a thirty year old I think I can just about tell the difference.
I’d like to say I can’t believe they’d diagnose you without telling you, but having seen some of what has (often wrongly) been written in my medical notes without informing me it doesn’t surprise me in the least. Thanks for sharing.
Hi 🙂 I had never heard of ME before reading your blog. I am in no way comparing my situation to yours, but I do want to say that I know what you mean when you talk about people not recognizing your ailments as valid. Implying that you’re lazy. I talked about it in my posthttp://mydisabledlife.wordpress.com/2013/06/25/you-know-what-you-do-you-dont-feel-bad-about-it/
While CP is indisputably recognized as a disability, people tend to look at me in my somewhat mild form of it, and think that if I say I’m unable to do something, it’s just because I am lazy or not trying hard enough. They think saying I’m in pain is only an excuse.
I too dread not knowing if I will ever not be in pain again. I don’t know a lot about ME. I don’t know if it’s curable or if you can heal from it, but I hope your pain and other symptoms subside. I hope you are one day able to resume doing the things that you love.
Thank you for your kind words. ME is generally relapsing-remitting so I may have periods of better/worse health in the future. From talking to friends with other kinds of disabilities it seems that many of the issues I write about are endemic all kinds of disabilities not just this one. If an illness isn’t terminal or particularly visible it is very easy for others to dismiss it. It is hard to understand how much harder life can be with even a ‘mild’ disability without experiencing it for yourself. I’ve really enjoyed following your blog.
Totally agree. Have had ME for about 8-9 years. The illness itself is awful (I had to quit all work and study and lose nearly all of my independence), but the misconceptions of it makes it even harder to bear.
I think you have done a great job of trying to explain what is so hard to explain to a non-ME sufferer – how severe and REAL this illness is. And how it most definately isn’t ‘tiredness’. I remember tired. Tired was the thing I pushed through after little sleep, too much stress, etc, with a bit of effort and some caffeine. This complicated illness that has so many symptoms that makes even sitting up in a chair difficult most days is not ‘tiredness’.
Beautifully written! Thank you for helping educate those that don’t know.
Thanks for this, I used to write a lot but am no longer able often so I am so grateful when someone like you says just what I want to say!
For several years I was too severely affected to hold a proper conversation or use a computer. There was so much I wanted to say but had no voice to say it with. I thought a lot about what I would want people to know if I had the ability to speak to them. Now I can write again, I try to speak on behalf of those who are still voiceless like I was and this blog is the result of that. Thanks for your support. I’m glad you found this post helpful.
Hello to all you ME sufferers, (Chronic fatigue, yuppie flu etc) I was diagnosed 25 years ago after suffering with chronic tiredness, headaches, loss of vision and balance and burning joints. I became bedridden for several months and was lucky to get a diagnosis after about 9 months of ruling everything else out! I worked for a major retail chain and was unable to get out of bed let alone travel the country buying merchandise for stores. It turned out that my ME might have been triggered by glandular fever as my blood showed I had had the epstein barr virus. Go forward 5 years and I had my 2 children – with a lot of my mothers help – she lived with us after the children were born and got me through. Go forward another 5 years – still really ill – missed out on so much for my children – go forward 5 more years and I had learnt to “manage” my illness. EVERY day I would go back to bed for 1,2 or more hours in the afternoon.
Go forward to present day – 25 years on – most of the people I work with dont realise that as soon as I finish work in a school – I go home to bed. I manage my illness – I have got to the stage that i am not cured – dont think I ever will be – BUT I rest after work every day, My family are really good – if I say I have reached my limit – they know I am already beyond it and say – go and rest.
Whether the illness is under control – i will never know – but I do say that I MANAGE my illness now and not let it rule or ruin all of my life. It has had 25 years of my life and I will not let it win BUT my message is – Work with it – manage it but listen to it – so now I have whole days where I am good- to the outside world I look Brilliant!!! But listen to your body and it will let you know when you can do a little bit more and a bit more!!!
Thank you Sarah for sharing this very true story. Nice to help other people understand a little bit better about this devastating illness.
Therefore, may we put a Dutch translation of your article on our website, run by and for Dutch ME patients? Of course with copyright citation.
I am very excited to have this post translated into Dutch. I never imagined when I wrote it it would have such an incredible response. Please feel free to use it on your site and get the message out to as many people as possible.
This made me laugh. My husband and I wrote a letter to explain his diagnosis to family and friends, in 1994. We included some well-meaning and some ridiculous advice as well. Not many saw the humor, but sick people enjoy it!
I find it difficult to convey just how debilitating this illness is, even when I think that I have made progress I am proved wrong. Some years ago my lovely brother advised me that he was going to take me on a rollercoaster ride at Blackpool known as The Big One to simply ‘snap me out of it’. Indeed. 🙂
I can identify with what you say here. Over here in Australia ME is known as CFS (Chronic Fatigue Syndrome). I was diagnosed with it in 2009. I’ve been on the roller coaster ever since. People are so ignorant and say such cutting things. They have no idea. I have made quite a lot of recovery since the first diagnosis though I know that it is easy to relapse. (I’ve had several this year). Don’t give up hope, explore alternative treatments and follow your heart is the best advice I can give anyone with the condition.
Great post. I have an friend who has diagnosed herself with various different illnesses, the latest being Aspergers, oh and Ehlers Danlos Syndrome, which she has been categorically told by several doctors that she hasn’t got. The day after doing literally 100 lengths in the pool, she will complain she is achy, so she must have some serious unseen disability. She makes me angry because it’s people like her that make it harder to be taken seriously by a GP or specialist, and who give people with genuine invisible illness a bad rep. . I have not seen her lately, but i would love to tell her to her face what i think of her. Not that Im bitter. 😉
I always think of this sketch by Ricky Gervais: http://videosift.com/video/Ricky-Gervais-ME-Sukki-my-daughter-walk-many-miles. Used to love Ricky Gervais but impossible to laugh at this now 😦
Yes, this sketch was hugely controversial among those with experience of ME and he got a lot of complaints about it. It might have been OK if ME were widely accepted and understood so his audience knew he didn’t really mean it but when people already hold these kinds of views it simply reinforces damaging stereotypes and assumptions.
I think it is representative of the attitudes and general ignorance surrounding ME. It does however, also raise the question (although not very sympathetically) as to why this is a western world disease and isn’t prevalent in cultures where people put themselves under a huge amount of physical stress. What are your views on this? I’m wondering if exposure to EMFs, chemicals in food etc could be an important contributing factor
It is hard to say whether ME is really more prevalent in the western world or whether people are simply more likely to receive a diagnosis due to better access to healthcare. For people living in poverty elsewhere in the world, many illnesses (including highly treatable ones) go undiagnosed as people do not have access to affordable medical care. There are therefore no reliable statics for the prevalence of ME in other parts of the world.
If ME really is more prevalent in Western countries then like you say factors such as pollution, chemical exposure etc could certainly be contributers. I think the fact ALL ethnicities within western society are at risk of ME would support this. Despite the perception that it is a white middle class disease, working class Hispanic and African Americans are significantly more likely to develop ME than caucasians and if race/genetics not environment was the primary factor you’d expect a similar prevalence in the countries people emigrated from.
Some people think over-sanitation of Western society is to blame. Autoimmune disorders seem to increase in direct correlation to the decrease in various paracites and the like that still exist in poorer nations where ME is far less apparent. I guess until researchers identify a diffinitive cause its impossible to say..
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Reblogged this on Alexis Stone: Seeing in the dark and commented:
Worth a read, especially as it’s ME awareness day on Thursday…
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I have been living with ME for more 5 years now. Well, when I say living, I mean just trying to get by. I just wanted to say I saw that Benidorm episode and took it more as making fun of the misguided, misunderstood view generally held by many. I actually felt somehow validated that the condition was even mentioned. Maybe that’s just out of desperation. But the exchange did make me larf. “yeah sometimes”. LOL. But yeah no my life is not funny and this goddamn condition is no joke.