Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. Parents with ME are missing precious days and years with their children due to the disease, and parents of children with ME are fighting to provide care for their sick children in a world where there is scarce medical knowledge, treatments and research funding for ME.
From May 5th to May 12th, the ME community around the world is fighting for justice for people with ME. We are the Millions Missing! Learn more at millionmissing.org.
Read the stories of parents with ME, and parents of children with ME.
My ASD daughter doesn’t understand why Dad is unable to get out of bed anymore, always living in the dark, always having to be quiet around Daddy, doesn’t understand why I cannot play with her to help her with her daily challenges, why mommy has to bathe Dad from the bed. More funding is a must for this horrid disease. It impacts our families in ways most cannot conceive of. We are the millions missing. Please save our lives. One voice from the dark.
– Glenn Yonce | Greenwood, USA
For me, parenting with ME is the most heartbreaking aspect of living this way. Before, I was the ever present, guiding and loving force in my son’s life. I homeschooled him his whole life and I felt pride in the fact that I was shaping my son’s educational experience. We went on adventures to explore his curiosity and practically lived at our local museums.
Now, beginning this school year, my son is in school and I haven’t even met most of his teachers. It took me 8 months to be strong enough to even see his school in person. How can I let go of him this soon. We had plans for travel and experience based education. Now he’s in a classroom often learning from a computer. My illness stole my son’s education from my grip!
He was 9 when I got sick and I’m grateful for those years that he got to see me at my best, but now at 14, we mostly hang out in my bed to talk and catch up when I can tolerate it. And the worst fear of all is him showing signs that scare me to death: he’s having some similar symptoms. That’s the worst nightmare as a parent. How can we make this stop?!? I can handle this physical torture, it sucks, but I can put a smile on my face when I need to for my family. That mothering instinct takes over. But I don’t want him to have to endure all this. Don’t let this beast attack my son! I don’t know that I’ll be able to handle that with any grace at all.
– Jes, Atlanta
Our daughter is 13-years-old and has been home bound for over 4 years with myalgic encephalomyelitis. She is in bed 99 percent of her day with fatigue and excruciating pain. She can’t nap and doesn’t sleep. Because of how weak she is, all of her meals must be eaten in bed. In fact, every aspect of our daughter’s life has been negatively altered. So, picture yourself or your child/grandchild/spouse/friend feeling like you just ran a marathon and then were hit by a bus. Your brain is so foggy it is the functional equivalent of stage 3 Alzheimer’s. Your body aches like you have the flu, every day for the rest of your life. Every sound pierces, sunlight hurts.
Imagine you feel this way and there is nothing you can do about it. There are no FDA approved treatments and very few people are trying to find answers with very little money. That is how our daughter feels every minute of every day without an end in sight. Our daughter has plans. She has dreams of her life without illness. When asked, “if you could be well tomorrow, what would you do?” she replied, “I would leap out of bed and be the first one at school. And I would stay there for the entire day!” The reality is that because she is so sick most of her day is spent in a darkened bedroom with very limited sound and movement. Socializing is a luxury. She has a constant headache, body aches, brain fog, and the constant companion- fatigue. These symptoms worsen by the minute when she gives any physical, cognitive or emotional effort.
Without any reason or cause, one year ago our daughter’s health changed from moderate to severe ME; all of her ME symptoms intensified (referred to as a “ME crash”). She is no longer able to leave her bed or perform any of her daily activities without assistance. She cocoons herself in her blankets to protect her fragile neurological system from the hyper-responsive reactions she has to any stimulation. This is the new reality for our child and our family.
What could have turned our powerhouse of a daughter into a weak and bedridden child? We figured finding answers would not be hard; after all we live in a major metropolitan area with many top-ranking medical facilities. We started out with getting her evaluated at major medical centers and in multiple departments. Each of department searched for a cause and ruled out countless conditions. One doctor told us, “Send her back to school. Kids with cancer still get themselves to school.” The search for a correct diagnosis was an excruciating process and financially crippling but getting the correct name for this monster gave it an identity. Another doctor told us, “It doesn’t matter what we call the condition, there’s no treatment or cure. So, the name doesn’t matter.” We disagree. Knowing the name of the disease matters and having a path to treatment is vital.
Our focus now is to protect and nurture our daughter’s fragile body. and to fight for ME’s recognition, funding and treatments.
– Amy Mooney, Chicago
Parenting with ME/CFS means parenting with hope in one hand and fear in the other. When I became ill in 1983, my children were young. My doctors were kind, but completely baffled. I was terrified that I was dying. One of my most painful memories is sitting in a hallway after a brain scan that my doctor had ordered to check for adrenal cancer, praying that, no matter what was wrong with me, my children would be okay.
I received my diagnosis in 1988 for what had been recently named chronic fatigue syndrome, now known as ME/CFS or ME. I learned that it was unlikely that I would die, but I could not be the parent that I wanted to be.
The unthinkable happened in 1991 – my teenage daughter became ill with ME/CFS. Seeing my daughter so ill was truly a nightmare. We were more fortunate than many – with the help of our wonderful doctor and severely limiting her activities, she managed, with agonizing effort, to stay in school. And, miraculously, when my first grandson was born, my daughter went into remission.
My grandsons are the joy of my life. But not a day goes by when I do not worry that they will have to deal with the same disease that has been so devastating for their mother and me. How, after all of these years, are we left with the terrible question – How many generations?
– Wilhelmina Jenkins, Atlanta
I am a parent who has ME. My daughter misses out on so much she misses the old me, our old life. Our life has drastically changed and she is struggling to deal with it. I miss being able to spend full days out without needing regular rest. My quick wit has melted away. My strength is withering away. I miss my job, the pride that it gave me. The holidays, now I struggle to cope in 15 degrees because of my heat sensitivity. I wish I could be reliable. I miss my confidence and independence. My girl has to help me a lot and she is only 11. I am housebound a lot of the time.
– Lin | East Preston, UK
I am a mother of two very energetic children aged 8 and 10. I have ME/CFS and I have had their whole lives. I go through many surges and crashes as I try to be as ‘normal’ a mother as I can be.
Each morning my children wake and eat breakfast and then shower and get ready for school. They then come into my bed and rub my back (quite vigorously) to wake me! I sit up and one of them has usually made me a cup of tea beside the bed. I do my daughter’s hair and kiss them goodbye and my husband takes them to school. I then sleep. My alarm goes off at 2:50, (in fact about 10 alarms go off) and I wake and try to eat something and get in the car to pick them up from school. I then sit with them while they do their homework and lie on the lounge and listen to them about their day and then cook some dinner before bedtime again.
Our house is never tidy as my husband works full time to earn enough for all of us and he also does as much as he can such as dishes, washes clothes, irons uniforms etc. The children do a lot of chores too. On weekends, my family love the outdoors and so do I so often we go places and I sit in the car watching or lie on a picnic rug while they are active, on the days when I can’t even leave the house with them I stay at home feeling like my bed is my prison sentence.
I’ve heard all mum’s feel guilt about what they are and aren’t doing right for their children. I struggle to fight against the guilt. Guilt for not working, guilt for a messy house, guilt for not doing more with my children, guilt when I can’t participate in family outings. I won’t lie in my darker moments, I’ve considered how much better my family would be without me as a burden around their necks. However, fortunately most the time, I still remain positive and hopeful and so do my children that one day a cure will be found and I will be energetic once more!
– Tamara, Penrith, Australia
Myalgic encephalomyelitis changed my daughter’s life. My daughter was diagnosed at age 12 with Myalgic encephalomyelitis, after having the Dengue virus. She was a very talented girl in music, she took transverse flute lessons and had a lot of sports potential, practicing Judo after school. Suddenly, this energy was drained and she spent days lying down and very sick. I kept an eye on what had changed my daughter. But, it was not the same, we changed everything for medical visits, laboratories, and a lot of fear.
It is terrible to see the days go by, and your daughter is in her room, alone, crying, and suffering. We cried together, and I’ve always understood her, living something unknown, something painful, and that nobody cares. I stayed by her side, night after night looking for information, looking for more people, trying to understand, and I could tell that this disease was real. I became an advocate for her, to claim her education rights, to make the family understand. Although it is a difficult task, it is not impossible. It is exhausting, but in the end, you are filled with satisfaction to find the best health, the best stability of symptoms, and to get her to go to school, even if it is just to see her classmates. Life wastes away, it goes by, and nobody cares.
We, the parents, have to defend our children, because nobody knows them better than we do, and we know that they are not just depressed. They are filled with joy and willingness. They are children who only need our help to face this unjust illness.
– Sara, Bayamón, Puerto Rico
I am a parent with a 46 year old daughter who has had ME for over 25 years. What do you think it is like to wake up in the morning so tired that you can hardly go to the bathroom? What do you think it feels like to see your pals go off for an evening’s enjoyment after work while you are in bed, exhausted? You go to your GP only to be belittled and told it is all in your mind. No job, no income, no house and all because you suffer from something that is not on the good doctor’s books and the welfare state does not have any boxes for you to tick to even get the basic state aid. What a future to look forward to. My daughter knows what this is like.
– Chris | Hull, UK
I am a single Mum with ME and Asperger Syndrome. I was also a World Fitness Champion before getting ME.
– Tanja | Schweiz, Wädenswil
Always one for going the extra mile, I did a bachelors and Masters degree with 3 young kids, followed my passion to work in environmental sustainability and community engagement, kept fit, bushwalked with my kids, went bike riding, bought and renovated a house as a single parent of 3 school aged children and worked full time. Then I got influenza A and B at a work function that turned into pneumonia mycoplasma in July 2015. I never recovered.
The mental adjustment to not being able to do as much as before was the biggest hurdle. Getting a diagnosis and finding acceptance that after 4 years I may never recover and not being able to have fun with my youngest child bites the hardest. I haven’t worked for 7 months after pushing myself to manage minimal hours since becoming ill and when I do manage to get out to a function or a gathering, I wear makeup and gratitude for escaping the 4 walls of my house to take a breath in the living, dynamic world. I can then take days or weeks of profound fatigue before I can raise myself again. People don’t see this part of my life and I doubt most have any genuine empathy because I keep that struggle largely to myself. To identify as someone who now has severely truncated abilities is awful and when the door opens on the lions cage I run on adrenaline because I am so happy to be out. The debt then has to be paid back. Often it’s worth it. I am a prisoner of my body, bed and house now.
I have 3 kids. The youngest is still with me at home. I love being a mum but now that my time as the one who cares for my child is coming close to the end before he leaves home too, I am missing the adventures we used to have. We would go camping, bike riding, bushwalking, skating, exploring new places with the dogs in the car and overnight trips away. Now I lay in bed and my son watches tv or plays games online. I resent what this illness has taken away from us all.
– Donna | Brisbane, Australia
I can’t be the bonus mama for my partner’s kids I would like to be. In the weekends when they are here, I lock myself up in my bed chamber. Because of my inability to interact without getting exhausted and my intolerance to noise, I can’t be around them for more than 5 minutes a day on average. I dream of the day I can go out with them to get an ice cream and be more than the woman in the other room for them.
– Mar | Hilversum, The Netherlands
I’ve had ME for around 13 years. My children are 22 and 24 now. It was a real struggle to look after them and work look after the home as they were growing up. The guilt still eats away at me of all the things as a mother I would like to have done with my kids.
– Lorraine, Glasgow, Scotland
In 6 years of living with ME I lost my career, my social life and my independence, but everyday I am most acutely aware of losing my roll as an active parent. My son had just turned 3 when I got sick and now at almost 9 he has no recollection of hiking, running or swimming with his mother. His mother doesn’t pick him up at school, go to his baseball games or take him to the beach every summer. His mother is one of the Millions Missing so he gets all his maternal attention from the bed, couch or electric wheelchair. I believe there will one day be a cure for ME, but my fear is it will come only after my sweet son is grown and gone from my home, taking with him all the memories we never got to make.
I have not been able to become a parent.
– anonymous | Stroud, UK
I want to visit my daughter who lives 300 km from me.
– Katarina | Alnö/Sundsvall, Sweden
I dream of the day I can dance, run and go for walks with my son and husband. I dream of the day I can say YES to everything I want to do!
– Jeanette | Bergen, Norway
I thought Ellie was just struggling from being a premie baby, always poorly, tonsillitis in endless bouts. Costochondritis got her in year 6 at school and within 2 years she had the flue and glandular fever. She barely got back up to get back into school, and then she had the hpv jab with her friends and has been very poorly since then. No education. No friends. No social life. Adapting to a wheelchair just to ensure fresh air.
– Great braxted, UK