You can now view all 85 ME Wishes here.
Myalgic Encephalomyelitis (ME/CFS) is a highly misunderstood illness, and there are many misconceptions surrounding this debilitating condition. So I asked the ME community: “What do you wish people knew about ME?
The following post is a collection of quotes and images from people who live with ME. Please take a few minutes to scroll through them – each wish represents a life devastated by this illness.
What is ME?
I would like to start with a brief introduction to ME.
ME stands for Myalgic Encephalomyelitis – an unpronounceable name for a severely debilitating illness. ME is also known as Chronic Fatigue Syndrome (CFS) but this name, although widely used in the medical profession, is controversial amongst the ME community mainly due to the fact that it perpetuates the myth that ME is just fatigue.
Far from just being tired – ME is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. People with ME experience debilitating pain, fatigue and a range of other symptoms associated with post-exertional malaise (PEM), the body and brain’s inability to recover after expending even small amounts of energy.
ME affects an estimated 30 million people worldwide yet there has been very little funding for biomedical research.
Although the severity of impairment differs greatly from patient to patient, 25% of people with ME are severely affected (housebound or bedbound). And sadly ME, at its most severe, can kill.
The underlying cause of ME is subject to much uncertainty and medical debate, although patients often experience symptoms following a virus or infection. This is one of the reasons why doctors have very differing views on how the condition should be managed, and why we still face so much skepticism and neglect.
There is currently no cure or effective treatment for ME, and patients like myself are often abandoned by the medical profession, and left to fend for ourselves. The lack of disbelief and ignorance surrounding ME is deep-rooted and causes significant harm to patients worldwide.
This must change. This is why we fight so hard to get recognition, to educate, and to raise awareness. We desperately need funding for biomedical research. Our lives depend on it.
If you would like to learn more about Myalgic Encephalomyelitis (ME) please click here.
I had such an incredible response to this campaign, and I am extremely thankful for everyone who has participated. I am unable to include every quote and image in this post, but I have created a separate post where you can view all 85 ME wishes, and also download them to share.
“I wish people understood that M.E. is more than feeling “tired”. It is an exhaustion that makes me feel like I’ve been hit head on by a double decker bus full to the brim of exhaustion. It is a tiredness that physically hurts me.” ~ Jessica Taylor-Bearman (JayTay blog), 29, Essex (she/her)
“ME is hard twofold : it leaves you unable to fight because of physical and neurological symptoms and because of the lack of “proper” biomarkers it gives others the opportunity to question the disease.” ~ Ricardo, 41, Portugal (he/him)
“I wish people knew ME robs you physically, mentally and socially. ME is a prison to my body. 2 years in my bedroom 24/7. NO, I am not depressed, passive or cognitively unable, I’m physically ill.” ~ Mari Ruud, 52, Lampeland, Norway (she/her)
“I wish people knew that the isolation and poverty ME often brings can be harder to deal with than the illness itself, which is brutal. I wish people could settle down into acceptance that we are ill and start helping improve our quality of life by making sure we have access to social connection, groceries, appropriate medical care, safe low-sensory-information home environments…” ~ Dov Zeller, 49, Western Massachusetts (he/him)
“More understanding & caring from the medical profession. Yes there’s no cure, but rarely ME patients have access to an understanding GP and don’t have care plans in place. This is me. This is after 5 years of ME, where I’m left alone with no care or consideration” ~ Hayley Date, 46, Bridgwater, Somerset (she/her)
“My exterior self does not reflect my interior self. Inside, I’m writhing, crying, dying. Outside, I will smile, laugh even. But that’s because I have to keep going with some semblance of normalcy.” ~ Raadkr, 49, Dakar, Senegal (she/her)
“I wish people understood that you only ever see us on our ‘good’ days. You don’t see what goes on behind closed doors. You don’t see the pain and suffering that ME causes to every aspect of your life.” ~ Amy Clark, 21, Dorset (she/her)
“I wish people knew that when I laugh, smile and joke around, it doesn’t mean I’m better or that my illness isn’t serious. It’s just how I cope with this situation and I won’t let this illness take away my humor.” ~ Rea, 27, Vienna (she/her)
“One of the hardest parts is the comments made due to judgements based on appearance. When my mom and I go shopping she will often put me in the cart because it is easier than pushing my wheelchair and a cart. People comment on how they wish they could be pushed around the store or call me lazy, when I wish I could walk through the whole store but can’t because of pain and fatigue.” Ellen, 20, California (she/her)
“I wish people could understand the pain I go through, how much strength and willpower I have to use to keep some level of normality. They only see me when I’m well.” ~ Nat (30), Derby, UK (she/her)
“Imagine a blood pressure cuff squeezing you from neck to waist, consciously forcing yourself to swallow and breathe, invisible sparks & jerks along your arms, main leg nerve blazing, feet pressed to hundreds of fine needles, and more – whilst suffering days in bed just because you cleaned the bathroom.” ~ Alix Boswell, 49, Bath, UK (she/her)
“I wish people knew how hard it is for people with ME to get social services, medical care, and disability accommodation. Systemic discrimination and ableism are destroying our health as much as the disease itself.” ~ Heidi Hayward, 41, Camano Island, WA, USA (she/her)
“I wish people could understand the burden of this disease; it takes your life, soul and everything you need to even reach a scale on the “Life Quality Index” ~ Martin, 31, Germany (he/him)
“You’re living in isolation in a glass bowl watching everyone do the things you want to do and be the person you used to be. ME is like dying, but still alive, and grieving who you used to be. Screaming: “I used to be useful like you” ~ Viv, 52, Nottingham, UK (she/her)
“I wish people knew how devastatingly life changing ME is not just for the person experiencing it but also for their partner and children (if they are lucky enough to have them) who take on the role of carer and how degrading and soul destroying that feels for the person with ME a mere shadow of their former self.” ~ Kerry Field, 37, Warwickshire, UK (she/her)
“I wish more people knew that it takes us twice as much energy to achieve half as much as people without the condition. Every little thing takes planning and preparation, and a good deal of patience… even if you can’t necessarily see it for yourself!” ~ Pippa Stacey (Life of Pippa Blog), 25, Yorkshire (she/her)
“I wish people knew that the institutions that are supposed to offer us healing often treat us as hypochondriacs or outright liars. When we fight back, we’re accused of being militant patients. We’re not. We’re simply the voices of those who have been stigmatised and ignored for centuries.” ~ Gigi, 18, London, UK (she/her)
“I wish people knew that ME affects every single aspect of my body and every second of every day. I never get a break from it. I wish people understood the incredible strength and resilience of the ME community. These people continue to advocate and support each other from their beds and I don’t know where I’d be without them!” ~ Whitney Fox, 31, Maryland, USA (she/her)
“I wish people knew how isolating living with ME can be. I’m hypersensitive to light, sound, touch, smells & chemicals, so I’m forced to live alone in a dark room – the outside world causes me harm.” ~ Jo Moss, 45, Norwich, UK (she/her)
“I wish people knew how much ME steals from us…careers, hobbies, friendships, independence, education, time with our children and family…our life is just put hold with no idea if or when things will get better.” ~ Chantelle, 33, Gloucester, UK (she/her)
“What I mostly wish people knew is that when they see me out in public, it’s not because I’ve recovered. I’m still sick, but may either be pushing myself knowing that I’ll crash afterwards, or I’m having a rare good day.” ~ Helen, 58, California
“I wish people knew that ME is a serious, debilitating, chronic disease that affects men, women, and children all over the world. ANY energy I expend, including mundane things such as: speaking, chewing food, or watching TV can cause a worsening of my symptoms. I can go from being capable of making a short visit out to later laying in pain unable to tolerate light or sound, incapable of moving or speaking.” ~ Heath, 47, Virginia, USA (he/him)
“The thing I wish more people knew about ME is how long so many of us spend just lying still, with curtains drawn, not being able to move or speak for so much of the time. That we have the will to do more – that inside we are impatient to be productive or be able to distract ourselves with crafting or journaling for example, but aren’t even able to sit up and do those things for much of the time.” ~ Ros Edwards, (44) Bristol, UK (she/her)
“I wish people understood how deeply we grieve our former lives. How much we want to return to: hanging out, doing our work, spontaneity. And that laying around all day is not: fun, relaxing, lucky. It is: boring, frustrating, agonizing.” Ariel, 50, Easthampton, Massachusetts, US (she/her)
“My wish is that people would understand that the NHS in the UK doesn’t know much about ME/CFS and that GP’s mainly haven’t heard of it and don’t want to deal with people who have it.” ~ Kate Brookson, 38, UK (she/her)
“I wish people knew just how much ME strips you of your autonomy.” ~ Lauren, 21, Sheffield, UK (she/her)
“I wish people knew how little research goes into finding answers to M.E., how tough it is to face a diagnosis that leaves you without treatment and to watch different parts of your life slip away.” ~ Katy Howard, 42, South London (she/her)
“I wish people understood how hard it is even to get up in the morning. How exhausting it is simply getting washed and dressed. I wish they could grasp that I can’t just push through it and carry on. That they could understand what it is like to be in constant pain from one part of my body or another. And I wish they’d understand how much it constricts your life and how alone it makes you feel.” ~ John, 32, Norwich, UK (he/him)
“I wish people knew how daunting it is to get an ME diagnosis – a diagnosis which not only means chronic as in “life-long“, but also a diagnosis that many doctors have never heard of, don’t know how to treat and often disbelieve its existence. How abandoned you feel when there is no medical professional to help you cope with pain or symptoms.” How much pressure it puts on a chronic illness patient to research and manage their medical condition all by themselves.” ~ Nina, 33, Berlin, Germany (she/her)
“I wish people understood how hard it is to keep going when your situation is hopeless; how having ME means that I never got to start my life and I never will, but at the same time there is no end either – stuck in this limbo state of endless suffering 24/7.” ~ Jaime, 22, Cheltenham, UK (they/them)
“I wish people knew ME is not “just being tired”. There are dozens of symptoms. I deal with crippling exhaustion, nerve pain, body pain 24/7, headaches, noise and light sensitivity, back pain, to name but a few. I’ve gone from being a figure skating coach and ex athlete to this.” ~ Linda, 49, Scotland, (she/her)
A huge thank you again to everyone who sent me their #MEwishes.
If you would like to support my advocacy work, you can here. Thank you.