Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. We received heart felt stories from around the globe chronicling journeys with ME. This week we touched on parenting, aging, marginalization, and careers. Today we want to share more of your stories. While not all of these stories fit into one specific thematic box, they do all have threads in common. This illness affects millions of people. It is not rare. You are not alone. The more we speak up together, and highlight our experiences, the less we can be ignored.
From May 5th to May 12th, the ME community around the world is fighting for justice for people with ME. Learn more at millionmissing.org. While are events are one week long, we fight all year long. We need treatment options, compassionate care, education, and ultimately, a cure. We will not give up on you.
A reminder from all of us at #MEAction: We hope that you will join in the conversation on social media. While you participate, we want to remind everyone that your very existence is enough.
KT, United Kingdom
My name is KT King and I have suffered with ME for over 25 years.
ME has ruined my life.
After graduating from university I relapsed and spent 6 months in bed. At that time my parents and I didn’t know what was wrong and the Dr’s didn’t either. For the next 25 years I was made to think it was all in my head, that I was pathetic and weak.
I recovered enough to go to Australia where I began to realise that I would never have the career I had dreamt of which was working for UNICEF or the UN. The hours needed in and out of work to build a career were too much for me. I returned to the U.K and worked part-time. When I ended up in a full-time job I relapsed again and had to leave. At that time I had a partner who helped support me and with small redundancy pay I began to train in complimentary therapies (which I had started to use due to getting no help from the NHS). I slowly built up a business doing counselling, hypnotherapy and healing. I struggled to make ends meet after my partner left, still only able to work a few hours a week. After 10 years I had a bumper year and quickly became a victim of my own success. In 2012 I relapsed harder than ever before. Overnight I lost my home, my business and my independence.
I spent 2 years in bed 24/7 and still the Dr’s didn’t care. Finally, after 3 more begging attempts, my GP agreed to refer me but warned me it wouldn’t make any difference as there was nothing they could do. I live my life horizontally and invisibly most of the time.
Since then I have lived with my elderly parents I began to write a novel to help raise awareness of ME. I self-published in 2018 and am getting 5 star reviews but I can only work a few hours a week at most. I get no state aid and am reliant on my parent’s charity. It is this creativity and escapism of my writing which keeps me going now. Although the future is one of likely homelessness and poverty, I am hoping that my novels might be the miracle I need to support me when my parents are gone.
To download my novel, see reviews and more please visit: https://linktr.ee/ktkingbooks
MISSING SINCE 2017
As healthy I was very active; trained spinning, swimming, circle gym, yoga, gymnastics, strength 4-6 times/week and was a yoga-instructor.
My health problems started in 2014. In 2016 I was diagnosed with Fibromyalgia and in 2018 Myalgic Encephalomyelitis. My ME has been come and gone in episodes, the episodes has become increasingly denser, longer and more difficult. Have had several episodes since I have been completely bedridden up to six months. Located like a living dead in bed, involuntarily isolated in the bedroom. When I’m in a episode I have extreme pain in my body and head, total lack of energy, muscle weakness, memory difficulties, impaired cognitive functioning, hard to find words and are incredibly sound-sensitive.
I have post‐exertional malaise, sleep disturbances, sore throat, intolerance to chemicals and foods. I use pacing to minimize the risk of “crashing”. I am resting much, but never feeling recovered. It´s like trying to charge batteries that won’t charge.
I can not choose what I want to do, not plan something, it’s the disease that governs my decisions and my life. I don´t know when the next episode come, and if it will be permanent or not. Having ME means to never know how I will feel minute by minute, whether I will be left bedridden again, and if so, for how long this time? I have to take one day at time. I’m missing training, traveling, socializing, spending time in the nature, cooking and baking.
I have been dealing with ME and other Illnesses. I was a World Fitness Champion.
Rebecca, United Kingdom
I’m fighting all my anxieties this year and speaking at MM in bristol, opting for a further away venue so i can avoid public transport..and sleep in the car. I’m almost 15 now and I am so worried for my future. I have my mum and dad in my corner fighting all the time but when will this end? I dip from low energy to no energy, from long sleeps to no sleeps. Just tired but wired..hearing everything but not able to join in with any of it. I’m learning to pace now.
Lynette, United States
My not living and just existing a miserable life with cfs getting beat while limbs are weak and won’t move even while pregnant.
Alan, United Kingdom
I’ve had it since 1987 After a traumatic shock & it has completely ruined my life. Sympathy & help here VERY hard to come by. I’m a veteran of the armed forces & they are pretty bloody hopeless at understanding it & helping me with CFS/ME/FMA.
Liz, United Kingdom
The doctor has no idea how to help me so I’m left to rest with the hope that with research they will find a cure or effective treatment. I was discharged from my specialist because I couldn’t attend the sessions. I tried 3 separate occasions & now I’m left to try make myself better.
Sarah, United States
Since I was a child, I knew I’d be an artist. In my first exhibit at 12, someone approached me to collect my still-life. As a young adult, I maintained my creativity then eventually went in to teaching at the college level after various creative jobs. My ME onset was 20 years ago as I had an unexplained 30 pound weight gain. For a decade, I continued to teach a range of subjects (nine total) but struggled with unexplained symptoms like frequently vomiting the night before class. In 2016, I was diagnosed with POTS by a leading world expert which explains the nausea & vomiting as ME shares a mitochondrial overlap with POTS. My first POTS episode was at 25 where I actually passed out.
While I was a lecturer at an elite university, I collapsed and went to the ER. 22 hours in the ER with full spinal MRI. The resident came in and said: your spine is really messed up, but we do not know what’s wrong with you. The day after the semester ended I had to file for disability. ME was challenging in the first decade, but my disease has made the last decade impossible to teach. I’ve been in severe stage for the last five years where virtually everyone tells me I don’t look sick and that I should go back to teaching, but they do not grasp my limitations.
Over the last decade, I’ve maintained my creativity to paint in my studio even though teaching was too demanding. My process is based in improvisation which allows me, when already set up, to create quickly. My aid drives me to the studio as my immunologist told me I can’t drive anymore. My art has sustained me thus far to create when I’m physically able, but my movement, thinking and walking are getting markedly worse. I use my father’s cain to help with balance. My specialists’ office is working on a wheel chair via a foundation. I can’t remember the last time I was in my studio, but I have not given it up.
I am 30 and have been ill for 9 years. Lack of understanding of M.E meant I was not diagnosed for 5 years. The delay in my diagnosis resulted in me trying to push through my illness. This made me more ill and now I spend 99% of my life in bed or on my sofa with further decline obvious year on year. I miss living my life, flying, skydiving or just going out with my family for the day together.
Elaine, United Kingdom
The Loss of What Might Have Been
I had worked for non-profit organisations earning less than my contemporaries and working longer hours. At last I cut my hours to work part-time to follow a lifelong dream of going to Art School, also part-time. I was accepted at a college and was so excited to finally be studying something I loved and to be doing something for myself.
ME put an end to that after barely one term. I had to leave and because my vision was affected. At home I could hardly sketch and had no energy to paint. I hoped that I might return to the college but after 4 years it seems now like an impossible dream.
The grief and loss of everything that is important is enormous. The loss of social life, friends, intellectual stimulation, the sense of self and the ability to choose one’s activities be they as small as reading a newspaper or as large as travelling to visit family. There is no way to describe the ongoing grief and loss of what might have been.
I was 14/15 when I first got sick. When I was 16 I had to drop out of school. I didn’t see my friends for months. I spent all my time alone, in my bedroom, ill. I became invisible. It was almost like I didn’t exist anymore. My teenage years, lost. I got better, but I never fitted in at school or in my friend groups. My illness made me an outsider. All teenagers feel lost, but I think it feels a bit different when you have this illness. Sharper, more painful, more terrifying.
Laurie, United States
I’ve been missing since 2012. I was used to working and being capable and independent until I was hit with this disease. I’m in my 50s, I live alone, and I don’t have a caregiver. There is no one else to earn an income, run an errand, do a household task, help maintain my home, solve a problem, assist in an emergency, or be an advocate for me. With my foggy mind and failing body, it’s still all on my shoulders. I struggle to take care of myself and my necessary responsibilities. This is my life now. If I get worse, there is no one who will step in and take care of anything. There is no one who will make arrangements for me to get the help I need.
dSavannah, United States
I miss seeing my friends. I was the party planner. I got everyone together. It seems everyone has forgotten me.
Lainey, United Kingdom
My name is Lainey, and I am missing from the mosh-pit. Before I got diagnosed with ME, I remember how much I loved live music – you could always find me looking eagerly for the next gig, or disappearing into the thick of the music festival crowds. A rock and metal fan at heart, I felt so alive when I was moshing with the energy of my fellow music fans.
But then, years later, ME struck. As the symptoms manifested and took hold, I found my love of live music being pulled away from me.
Sensory overload means that I struggle with bright lights and loud noises (yes, even with earplugs). Brain fog has rendered me unable to cope with large crowds. I get overwhelmed which can in turn trigger a “crash” or panic attack. Muscle pain and joint stiffness mean that I cannot cope with standing for a long time, and certainly would not be able to hold my own in the pit anymore. Yes, some (but not all) venues provide access for customers with disabilities, but often, those with invisible illnesses can get overlooked. On the surface, we often “don’t look in pain.”
Typically with ME, we may experience a day where we are just about able to get out and about, but then we know full-well that we will be likely rendered bedridden for days afterwards. When I have tried to enjoy live music on such days, this has always been the case for me. ME has rendered me incompatible with a lifestyle that brought much joy to my life. I hope one day I can enjoy live music again, the way I used to. Sadly, with the lack of treatment and understanding of this condition, I just feel like I am a forgotten one of the Millions Missing.
Scarlett, United States
My Illness is invisible.
I look normal on the outside but inside I’m in a constant battle with pain and PEM along with many comorbids that go along with ME. People will look at me and because I look normal, they will automatically think I’m recovering from my illness. (In the beginning I looked far from normal I had lost all my hair and was swollen all over). They think after seeing me for 1-2 hours and looking normal that I must be fine. What they do not see is once I leave you is, I will first have to take a 3-4 hour nap then still be unable to do anything for the rest of the day. My days are spent in prisoned in my bedroom in the bed with blinds drawn to keep the light from hurting my eyes. I will not let you see that side of this illness. I’m too sick at that point to see anyone. I only emerge after I’ve rested up. Everyday I have to make a choice as to what I will do with my envelope of energy because I only have so much and it’s gone. I only do what is necessary and a lot of times it may just be one thing that gets done but that’s ok there is always tomorrow and I can try again. Recovery from a little outing of 1-2 hours can be anywhere from 1 day to months. I pay dearly for anything that I do so I am very choosy about how I spend my time. It has to mean a lot to me to do something to give up my precious time and energy and to suffer the consequences. Those out there without invisible illnesses please reserve your judgement of us as we park in the handicapped parking spaces, just as I do not judge your disability that is visible. Let’s all be kind to one another.
Relationships: Every relationship suffers from your illness: with family, friends and even your partner. Those who can’t take it anymore, run and you stay behind, bereft of the most important things in life: the love and care of other people.
Guilt: You cannot live up to the expectations anymore. You love to have people around you, but you’re just too damned tired all the time.
Linda Lancashire, UK
I am invisible and suffer in silence. I live inside my body, trapped, but still me. I have been suffering with ME for nine years and as my husband says I have been robbed of a normal life. I make jewellery as a way of making my life a little more bearable. It’s hard because the face I present to the world is nothing like the truth. I can be in bed, or just undressed and in pj’s for days but that’s not what people see. They look at me and see nothing wrong, and have often said so. I have been treated very badly when out because I dont look disabled in any way. This adds another level if complexity to my condition as it adds to my feelings of inadequacy as a functioning human being. I hate that this disease has done this to me.
Do you know what it’s like to lose your identity, your self worth, or your career? I do! In May 2012 I was living and working in Mexico, doing what I loved – teaching people how to scuba dive and others to become industry leaders. I was a PADI Master Instructor and I could teach 21 specialities. I was a Divers Alert Network Instructor or Instructors. I was an Emergency First Response Instructor. I was a trained sidemount and Tec diver with over 3000 dives under my belt. Now, I am NONE of those things. I am now trapped in a body that has only once been diving since 2012. I spend 85-98% of my day in bed and though I do get out a few times each week, there is always a penalty to suffer. I choose to continue to life life joyously within the tempest of adversity, but if I had a choice…I would be back in my beloved oceans, beneath the waves, dancing with the sharks, turtles, and rays.
Marian, United States
I was an athlete and overachiever. I was out on a hike when this horrible illness hit. I suddenly felt extreme exhaustion and weakness. My friends got me back home, I slept 12 hours, woke up and thought it was weird. Until that extreme exhaustion and weakness became my new “normal”. This illness is torture and has taken my career, my joy of being active, and my mind. It’s like having a combination of MS and Lupus for those not familiar with ME/CFS. See ME.
Jackie, United States
Extreme fatigue, insomnia cycles, constant crashes, pain and constant hives covering my entire body have always been my top complaints. Of course, I have at least a hundred other symptoms, diseases and syndromes from this. I am always resting but getting no rest, never feeling refreshed. I miss friends and going out to have fun or even a restaurant! I miss the possibility of a relationship and not being alone the rest of my life. I miss being social! I miss the beach. I miss working as a hairstylist. I miss FAMILY. I miss eating but now Im allergic to everything. I miss living on my own. I miss being able to shower by myself. Being able to think clearly or remember anything! I miss being able to comprehend TV. I miss being able to do my makeup and hair and put clothes,jewelry,shoes on and not living in pajamas 24/7. I miss laughing. I miss human contact. I miss the thought of normal life and being able to leave the house. I miss driving. I miss not having to feel so ACHY WEAK HEAVY DIZZY EXHAUSTED PAIN which makes you grumpy. I miss being able to stand or walk for more than 2 minutes which would allow me to make food for myself. I MISS LIFE!!!
Gibana, Austin, Texas
I live my life horizontally.My illness is invisible.I may appear in public for one hour, and then spend the next 5 days recovering from that hour where I appeared “normal.” Most people do not see me during the time that I am in bed. I am supposed to attend a mandatory court ordered class that I continue to miss classes because I just do not have the energy. I used to have a career in Accounting and than I went into remission and decided to be a Medical Assistant. I worked with patients in Wound Care. I got sick again and I am currently on disability. It just sucks to feel this way and I PRAY for a cure and Hope for more Awareness so people are more sensitive and understanding.
Anonymous, Brighton, UK
I became ill with ME when I was 29. I am now 65. I have never been able to have a career despite being well educated. Thank God I have been able to do some things in my life but I never dreamed at 29 that I was never going to recover enough to be in paid employment. I have had better and worse phases. During the worse times I have had less energy than people in the last stages of terminal cancer. This is a serious illness and needs to have well funded research.
Ashley, Drammen, Norway
I may appear in public for 1-2 hours, laughing, seeming HIGH on energy, looking good in my make up and dress but what YOU don’t see is the aftermath, i spend the next 1-2 weeks recovering from that depending on how happy and talkative iv’e been and how long after the pain, brain fog etc appears until i put on my breaks and go home. The earlier, the better prognoses are for me on recovery. Please don’t say stuff like «Are you leaving already?!» it is so hard for me to say it is enough and thats why I rather not go in the first place. Encourage me and others with ME «to stop and go home. That it’s okay that I couldn’t stay longer – it was nice to meet me!»
Michelle, Darwen, UK
I’ve had M.E for 11yrs this September. It all started on the 22/09/08. I was working as a nursery nurse when one afternoon i started to feel extremely sick. A migraine surged through me, i felt sick & my head was spinning. I couldn’t lift my head from the table.. I was sent home immediately. Around 3days later i started to come around, i had been diagnosed with a virus. It had literally knocked me off my feet. I went back to work, but i never seemed to get any better. A month later i fainted and started feeling like i was constantly drunk. Fast forward 5months and i blacked out at home, then came the pain, it brought me to my knees everytime. I went to the doctors (you’re fine!) I saw specialists (you’re fine) I saw mental health professionals (as the doctors where saying it was all in my mind!) Guess what they said? (You’re fine!) By now even i thought i was having mental health issues. Then one day i had a seizure and lost all feeling down the right side of my body. I couldn’t walk or even move. I went to the hospital (You’re fine!) I dragged my right leg for 2wks.. In the end it took 3yrs and a mariad of symptoms to get my diagnosis, which left it to late to treat. I had spent 3yrs being made to feel like i was going crazy, feeling like i was imagining my symptoms. I was so grateful to have something wrong with me, because now i had something to fight! Sadly the fight goes on and for the last 2yrs I’ve been pretty much housebound. Bed to sofa, sofa to bed day in day out. Its a living hell watching the world go by, watching my children grow without their mum being, fully there for them. Thankfully i do rarely get a couple of hours respite and i make the most out of it, whilst i can. I’m extremely lucky! I may have severe M.E & Fibromyalgia but i occasionally get that much needed break. Sadly so many M.E sufferers don’t even get that. They’re laid in a bed day in day out, in a darkened room. Unable to eat without tubes and unable to take care of their personal needs. With no hope for the future but a life, living a death. They need a treatment, a cure & respect. We all need research, we all need help and most importantly we need understanding and respect!
When you live with M.E you live with..”Well you don’t look sick!”
No I don’t look sick! But, then those two hours where you saw me manage to get out and socialize, are then followed by at least a week to six weeks of recovery. That means laying in bed or laying on the sofa, unable to stand, bath or shower. Unable to spend time with my children, to talk on the phone and quite often unable to eat. Wrapped up in severe pain whilst praying for my next good day. Watching life pass me by as i lay there.. I will NOT stop fighting though and every hour i manage to spend outside of these four walls is worth the pain. The photo included is me straight after managing to spend two hours sat in the pub for my daughters 18th. I got home fell into bed in severe pain and cried. I couldn’t remove my makeup or my clothes so i had to crawl onto the bed as i was. I finally managed to clean off my makeup with wipes the next day. But i was unable to bath for over a week. The second photo is me before M.E, During a very good day & me on an average day. Again i will not let my life fully pass me by without a fight! Yet there are still dark, dark days where the point of life surpasses me.. What is the point? I can’t LIVE i just survive! I’m no use to anyone, i can’t work, i can’t help my children with their homework, i can’t keep my house clean, i can’t take a lovely relaxing walk in the woods, damn half of the time i can’t even brush my teeth. I cry in pain both physically & mentally.But then i fight for my life once again! I hope one day for a treatment, for understanding, for respect for the life i once had. I will never give up!! But, i will cry and consider giving up on a daily basis. Friends and family lost, just my husband, children and a few close friends & family left.Everyone else has long gone, given up on me 10yrs years ago, taken me for a lost cause, a hypochondriac, lazy and selfish for missing special occasions.They all saw my healthy look and took that for gospel.They didn’t see my pain, my seizures or my life slipping away, nor did they care! I will never feel angry and i will never lose hope, I will just keep hoping that one day we will all have our lives back 💙
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Liz, Atlanta, Georgia
I was a backpacker and a hiker. I loved to walk through the woods, to camp out, to feel the earth under my feet. I had a backpack that I would stow with 35 lbs. of gear, pull it up over my shoulders, buckle the hip harness and hike confidently into the backcountry for days at a time. I can’t do that anymore. In April of 1991, I caught what seemed to be the flu. It was a Monday. I remember it clearly because I was angry that I was suddenly so sick – this flu interrupted my plans, my work, my life. I never recovered. In that first maddening year, I consulted 7 doctors and endured numerous tests. I was prescribed medication for nausea, head-aches, insomnia and pain. Nothing worked. All the while my health declined so precipitously that by the end of that first year, I was bedbound. It was the 7th doctor that said, “Chronic Fatigue Syndrome.” I was both relieved (it had a name!) and insulted (it’s called Chronic Fatigue Syndrome?). Fast-forward to today and I’m still battling the same, damn disease. And I’m one of Millions. As a long-term, disabled ME/CFS patient, I endure for lack of any better options. I hold on to the hope that I find within the ME/CFS community. We are down, but not out. From my bed, I see my backpack leaned against the wall of my room. I cannot bring myself to move it. I like seeing it there – I like to think it waits for me. It reminds me that there was a time when I walked on my legs. A time when I walked far.
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