Humans of ME / CFS

“Prior to 2017 I had built up a successful career in banking, which I worked hard to achieve.

I became really unwell going through numerous surgeries as a result of IBD and in 2019 I was diagnosed with my CFS.

It took over a year to diagnose as we had to give my body time to recover first.

I was unable to return back to work, which is something I beat myself up about regularly. I was career driven, ambitious and independent and it feels like all of that has been taken away from me.

We really wanted to try for children after our wedding in 2018 but my health has prevented this. Its hard to accept but I hold onto hope that maybe one day I can achieve this dream.

I regularly have to cancel on plans and feel like a let down.

It's important that we don't push ourselves too much though. My parents and husband have became my carers and help with a lot of the general tasks in my home and I can't thank them enough.

Sometimes I even have to be helped to the toilet. I never wanted this life for my husband and I feel like I'm not being a good wife.

I’ve had no help since my diagnosis. There are no treatment options for me. It’s all incredibly frustrating”

- Jessica

“ME has completely destroyed my career, ambitions, and hobbies.
I became ill at 14 so was never able to work a paid job, but took up a range of voluntary jobs that were both fulfilling for me and good for society.

However, as my ME has progressed I have had to give up these jobs.

I am now unable to do any of my hobbies, and have no ambitions for the future as I know that if I have them ME will steal those from me as well.

ME has really affected my social life;

I have lost a lot of friends since my diagnosis and as I have declined.

It has had a devastating effect on my family as they have had to watch me suffer immensely, and become carers despite them all working or studying full-time.

Recently my relationship ended, in part because of the limits ME places on my life.

When I was first diagnosed, the only help I was offered were 'self-management' sessions in which we were told we could get better but not how, and everyone just sad around and cried, and GET.

GET took me from having mild ME and being relatively high-functioning, to being on the worse end of moderate.

I went from being able to walk quite far to being a wheelchair user in about 9 months. I don't mind being a wheelchair user, but the fact that I ended up in one because of medical negligence/abuse is appalling.

After leaving the service, the only care I have received is basic medication provision, most of which myself and my family have had to fight for.

It is only my co-morbidities that have developed alongside or because of ME that have been taken seriously, and even in those cases, I've often had to seek private care as the NHS doesn't cover it.”

- Jessica

“I had big dreams

I wanted to be a positive influence in society, start a sustainable business or festival and cycle around the world.

My main aims now are simply being able to cook my own meals, brush my own hair and live independently (CRAZY right!)

I know I am BLESSED to have a safe roof over my head and a wonderful family

But it would mean everything for me to get my health back, run outside and feel my whole body full of LIFE!

Instead I lie in bed in a dark quiet room every day, relying on 24/7 care from my family

I now mostly connect with my friends via voice notes as I’m too exhausted for chats or visits. I can’t wait for the day when I can go for a coffee with a friend, and dance and laugh with them.

My family have been my rock through my illness, but I often feel guilty for not being able to chat as much, walk our doggies on the beach (YAHHS!) or enjoy a movie with them.

Its saddening how little our health system offers for the chronically ill

We need detectives to find and then treat the ROOT cause, instead of simply being given medication which reduces our symptoms.
We need doctors who specialise in all chronic health conditions
Who can look at our body as a whole instead of just parts of us
My holistic health providers have been much more important in my personal recovery,

After 4 years I have finally found that I have had Chronic Lyme Disease all along!

I urge anyone with ME to never give up looking into your health and what could be causing your symptoms.

Had I known ME was a symptom of chronic Lyme earlier I would not have ended up mainly bedbound.”
- Jodie

You can read more about Jodie’s heartbreaking story at https://www.bringjodieback.com/jodie-s-story

“I once owned my own halter horse breeding farm
Riding was my happing place.

I loved to dance, fish and was game to try anything once

I have no passions or ambitions anymore. It is all about self preservation.

A ten minute phone call with my father might mean that I don’t have the strength to take a shower that day

My partner has become my sole supporter. He runs the whole household basically as a single parent (I basically no longer have the cognitive ability to make sound choices for them.) My children have become caregivers before even becoming adults.

Chonic illness is much like terminal illness. Friends don’t stick around very often

Unlike terminal illness, we are not given any treatment for a fighting chance

I am now a 2 year patient at Stanford’s CFS clinic and I am never not in pain. I have been ill for 12 years.

The only word I can use to describe my treatment is abuse. It is a deep scar that has travelled all the way to the centre of my being.
You think abuse is the wrong word?

What else would you call six years of seeking help and repeatedly being treated like a liar, ju**ie and a hypochondriac.

Doctors always say listen to your body. I did
But no one would listen to me

I firmly believe that my condition would not be as bad if I didn’t have to”
- Karan

“I was always an ambitious person. I aimed to go to university to study for a career in design

Alongside that, I climbed for the Great British Climbing team and was training for the Olympics from 6 to 17 years old

However, during my A-level exams. I got a virus and overnight, my life was completely taken away from me
I have been 4 years bedbound with severe fatigue

I lost my friends very quickly as I could no longer climb and be in that ‘world’ anymore.

Luckily my close family have been incredibly supportive, as they battle alongside me with this illness.

They help to research different treatments as I don’t have the energy to

When I first became ill with CFS

The GP urged me to keep pushing to do walks everyday
They told me I was just ‘in a rut’

All the doctors I saw thought that the illness was all in my head and they couldn’t help

Which was utterly terrifying and confusing because all my symptoms are physical!

The advice I was given from health professionals made me worse and I lost trust in them

The ME/ CFS community service near where I live have been the only ones who have helped me

The two nurses there were so supportive and kind and did everything they could to help me

But most of all, they believed me”
- Ellissa

“I got sick at a very young age, I was about ten years old

I always thought I was lazy but I went to see so many doctors and they all told me the same thing, that "nothing is wrong"

So eventually I accepted that it was me, that it was my personality
Being tired and in pain was just something that was normal for me
I was diagnosed with ME only a year ago. I’ve now realised that I’m not lazy. In fact, I hate doing nothing.

I hate being at home without a plan or perspective for the future. It took me all the strength I had to get my highschool diploma. My biggest fear was to end up with nothing. Without a plan or goal for the future

All I wanted was to become something, someone important. So I could prove all the people wrong that had always told me that I coulnd't do it

People have always told me that I wasn’t driven enough to reach my goals. I wanted to prove that I was enough.

All my selfworth depended on my achievements. As my ME got worse I was forced to quit little by little. Now I am at home full time without any hope for my future

It has made me incredibly depressed. I am trying to see the little things. To be happy with the little things. But it still feels like I have failed massively

I never really expect people to believe me when I say I have ME
I have said something was wrong for so long and no one believed me then. I am ashamed of my disease. Especially because it is ME. There are so many people who don't acknowledge ME

I have heard my whole live that I was overreacting, that I was only seeking attention, it pains me to know that ME is not the "right" illness to convince people they were wrong!”

- Tamar

Call me crazy, insane, not on my game

That’s how I think the shrinks think I think

A reactive case at an irrational place

Irrational place in my brain because it’s an irrational game

Save me from my pain and suffering

Can’t leave home, no fields do I roam

Bed bound I become, this house doesn’t hum

Space bound might as well, closing in on hell

Lying by comatose like, don’t ask why I survive

Dad gives me my pills, for the aching, sweat and chills

Mother offers fresh food, with stomach aches i refuse

A little cry and my dog stands by, licking my teary cheeks dry

Moments of consolation for a man dying of starvation

In constant motion of deprivation, no noise, lights or vibrations

No distractions from my thoughts I sustain from an injured brain

On my bed I live, but to live one must do more than exist

Exist in a soul punctured by many large holes

I beg to find a rock to grasp, as my mind unleashes a traumatized past

Hopes dashed from years unanswered by fate, no dreams do I bother to relate

Help is not on its way, not in this game, not today
- Liam part 2

“When I met my therapist, he asked me to write down what best life would look like

I wrote about a career path in the Canadian forces

finding and living with a partner

having many friends and going on hikes and outdoor adventures

A couple months into therapy, after he'd seen what I was like, he told me I would have to rewrite most of my goals. There was no way after he saw how disabled I was

I couldn’t even stay awake through many of my sessions

I have been neglected and accused of faking my disorder by doctors on a regular basis. I was forced into a mental institution for 3 months. I was too tired to attend the dining room so I was always hungry. I was told that I was not actually in any pain. Getting fresh air required me to get out my wheelchair and walk through the corridors. Most days I was too sick too do that, so I wouldn’t go outside.

One day my doctor asked me if I thought that I was different from all the other patients. I said “Yes, I’m not psychiatrically sick enough to need this treatment.”

He agreed.

I was shocked that he admitted that I was not there for a medical issue, but because I ‘refused’ their treatment. In reality, their treatment required leaving my bed, which I was often too tired to do.

I went into this facility with moderate ME and came out with severe ME three months later. I’ve since been diagnosed with PTSD.

My friends were shocked by the level of abuse I received and witnessed at this institute, at the hands of doctors and nurses. I have never recovered to the level of health I had before this experience. I am too sick to go to court and sue the facility, but I have heard that they have had to settle disputes out of court for other patients.”

- Liam

“I spent years studying towards my Veterinary Nursing Diploma

I had just one year left

That’s when I became sick

I was helping care for a sick lamb, when I contracted Campylobacter and it spread to my blood

This was in October 2018 and I haven’t been the same since

My health has continued to deteriorate and I have yet to see any improvement with current treatments.

I had to delay my final year of Vet Nursing but I can’t wait to get back to it

I had a desire to help and save animals. Now I’m finding that the animals I have saved in the past, are the ones helping to keep me going

I am lucky that I have such a supportive husband with this illness. However, it doesn’t take away from the guilt I feel deep down. Wanting to be able to help around the house and do a bit extra for him when he gets home from a hard day at work. Instead he is having to pick up the slack. I hate feeling like a burden

I just can’t endure excess energy usage. I am just sort of sitting in limbo with an illness that not everyone agrees with. No one can deny I am sick though, as my heart no longer beats the same on its own, my skin hasn’t been rash free for nearly a year, and my liver tests tell of a body too hard at work.

I know people look at me and think, “She’s over-exaggerating.... she looks fine.... she just wants attention.... what a drama queen.... get hard..... at least she doesn’t have cancer.”

What they don’t realise is, a lot of people who have cancer are more functional than I am. The fatigue and pain which I deal with is incomprehensible and there is no easy way for me to describe it to others. Being so tired that you physically hurt can’t be explained.”

- Stacie

‘I was diagnosed with M.E aged 12

At such a key point in a young person’s life, I was dragged away from education and all my friends

I felt so isolated at home. Missing school meant that I missed learning how to communicate with people my own age, which has been a big source of my anxiety. This destroyed my confidence and self worth

I felt like my life was over before it began. All my ambitions, goals and hobbies faded away. How could I ever achieve anything of note in my life?

It took me almost 2 years to get diagnosed. When your illness is invisible, the medical profession doubt the validity of what you feel

I was referred to a neurologist in Liverpool, however from the very first appointment the doctor made it clear that he did not believe in M.E and was not looking to treat it, only the migraines I had at the time

My parents faced questions of whether they were hitting and that’s why I was unhappy, of course that couldn’t be further from the truth. My parents were supportive and simply looking for someone who would help me

Over the next 10 years we went through 30+ prescriptions many with painful side effects. I am now in the process of coming off my medication and will be back to receiving no treatment

In my mid twenties, my illness eased a little. On the few good days I had, I pursued my passion for filmmaking around my local area in Wales

I have always wanted to help raise awareness of M.E through film, once I was in a position to. I started writing and that’s when I came up with idea for a drama series called M.E, Myself and I. We now have produced two episodes, been featured in the media and just this week won 'Best Web-Series Pilot' at the UK Motion Picture Festival’
-Tom

“Mom is sick”

No more trips to the mall with my daughter
No more cooking my husband’s favorite dinner
No more teenage slumber parties at our house

In 1999, I came down with the common cold. Or so I thought.

That virus turned into a twelve year journey with chronic illness

I saw doctor after doctor, did test after test, all normal

So why did I feel so ill?

I was tired, dizzy, nauseous 24/7

I felt so misunderstood, lonely and discouraged

I was eventually funnelled into the psychiatric department , where I was told that the practitioners would no longer see me until my “depression was under control”

I was finally diagnosed with Chronic Fatigue Syndrome but not much was known about it at the time

The doctors and the medical community that I had put my trust in seemed to have no answers for me. The prescription meds they gave me did nothing to get to the root cause of my illness

Was I depressed? You bet I was. But I was
depressed because my body was sick, not vice versa

After 12 years, I have finally been able to create my own definition of wellness and create a sense of normalcy in my life. But it took a LOT of work

I am now a Health and Wellness Coach, who studied at the Institute of Integrative Nutrition. I am also undertaking studies in Functional Immunology.

My mission now is to not allow those years of struggle to be wasted. I will spend the rest of my life telling my story and helping others to get through their struggle.

Something good has to come from all this

- Linda

“After leaving school, I got a job in a bar
On the side, I would model and do gigs across the North West in my duo.
I was loving it. My life was finally coming together

That’s when it hit me
One night, I was performing at a gig and suddenly my voice no longer worked
I crashed so hard I had to leave in an ambulance.

I realised I must’ve had ME for years.
At school I had no energy to concentrate and missed my GCSEs because I slept through them

I was finally diagnosed with ME last year
I’m 20 now and I work as a mental health support worker.
In my spare time, I do the odd photoshoot and I’m working on my own music now.

I know that there are things my body can’t do. But I want to live my life to the fullest.
I now know my limits and do my best to say within them
I’ve come to peace with it all”
Emily-Rose

“I used to play football three times a week

But after being diagnosed with ME, I was forced to stop.
It was too much

That was one of the worst days of my life

I screamed and cried all the way home. I didn’t want to live anymore because I couldn’t be me. Since then I’ve always dreamt about playing again

I was a top student at school. But my attendance really suffered after I got sick

Somehow I managed to pass my A-levels and get into Keele University

Keele have been super supportive! They give me extended deadlines in case my ME flares up. This has allowed me to thrive at Keele, not just survive like at A-level

I tried out for the university football team, but I was in too much pain and my fatigue was too severe. I was heartbroken again

But I tried again in second year, thinking that even if I only managed one training session a month I would be happy
The first few sessions hurt so much that I would have to take most of the next day off to recover

I would have to sit out for most of the training, but it was more than I’d done for 4 years

I was happy

Slowly I built up my fitness and learnt how to manage the fatigue and pain

I even ended up playing for my uni team in an actual match! I only played for 10 minutes, but I was so happy to have my passion back in my life

My team has been so supportive! In May, we did a 1000 kick up challenge to raise awareness for ME and raised £560

I ended up being short listed for the ‘This Girl Can’ award at my university, which I was really proud of

My ME hasn't just disappeared and I still have bad days where I have to use my walking stick, but those 10 minutes on the pitch make me feel like I haven't lost to ME.”

- Laura

“When I was 17 my life changed

I thought I just had a sore throat. I had no idea I would never feel well again

Everything stopped abruptly. I had to leave work, college, socialising. Everything just stopped

ME is the loneliest place. Friends faded and family relationships broke down because they didn’t believe or understand how ill I was. The only people who truly understand are my mum, dad and sister

I’ve always wanted my own family and I love kids. But how could that ever happen for me? How can I find someone when my life revolves around my own bed and couch? When all I have to give is a life of sickness and disappointment? I don’t feel like I’m good enough for anyone

Now, imagine going to a doctor and being told that your illness doesn’t exist

That your experience is invalid.
it's all in your head, or there’s nothing that can be done.
That is what I have dealt with for years

I have learnt that doctors mean heartache
Trying to get help is horrible because I can't cope with the disappointment

We as sufferers are shoved on the top shelf in a dusty unused cupboard and left to get on with it as best we know how

We learn ourselves how to cope with our own situation because nobody in the medical field is there for us”
- Annie

“I came down with ME in 1982
I was 30 years old
And I’ve never recovered

The worst part about ME is how alone I feel
I am single with no family of my own

I had to quit working as a nurse

I have friends but ME stops me from seeing them as much as I’d like to
Years have gone by without interacting with people

I’m a strong and stoic person
But ME has chipped away at everything, making me feel like I have no meaning in my life

The silence space I exist in has become progressively more frightening and I’m scared for the days ahead as the void hits newer depths”

- Susan

“20 years is a long time to be all alone

I was diagnosed with ME at 39 and my husband just didn’t understand it

I was bedbound and had to quit my job as a nurse manager

He couldn’t understand what had happened to me and why I needed his support

In fact,

He mentally tortured me
The divorce papers came soon after
But the worst part is
He destroyed my relationship with my 13 year old daughter
He took her away from me and called me a bad mother. Told her not to message me

I only see my daughter now when she needs something

I’ve been living alone for 20 years.
I hate ME

I’ll be 65 in August and it ruined my life, my trust and my identity...
I have no passion left
I wouldn’t wish my story on anyone (but my ex-husband!).

It’s so sad. My one life and this is it”
- Marcie

We tell the stories of the millions of forgotten and suffering people that are struggling with ME/ CFS right now.

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