Living With ME: We Haven't Changed, Our Lives Have
Editor’s Note: This article was originally written during a particularly difficult relapse. While some details have changed over time, the emotions and experiences shared here remain familiar to many people living with Myalgic Encephalomyelitis (ME/CFS).
ME Is Kicking My Butt
It’s been a tough few months and I am trying my hardest to get back to some sort of normality, but I will be honest – right now ME is kicking my butt.
There are so many things that I want to do. Not things for me, but things that I hope will make a difference to the lives of others.
That is what I am fighting for.
Maybe the worst thing I can do is try to fight this illness, but I can’t give up. I’ve been through difficult times before and, like many people, there are things from my past that still hurt no matter how hard I try to leave them behind.
Living with a life-changing illness has a way of bringing those feelings to the surface.
I constantly battle with feeling like I am not good enough. I worry that people don’t care enough or don’t understand enough.
The reality is that people with ME all over the world face rejection, disbelief, and misunderstanding every single day.
The Things People Don't Understand About ME
One of the hardest things about living with Myalgic Encephalomyelitis is that people often judge what they can see.
I’ve been told countless times that I would feel better if I brushed my hair, got dressed, or put on some makeup.
What people don’t realise is that even those simple things can be incredibly difficult.
To brush your hair, you have to be able to lift your arms above your head.
To put on makeup, you need steady hands and enough energy to sit upright.
By the time many people with ME have managed those tasks, they are already exhausted.
The pain may have increased.
The shaking may have become worse.
The energy they had for the day may already be gone.
What looks simple to somebody else can feel impossible to us.
"You Stay Home All Day"
There is also a huge misconception that people with severe ME spend their days sitting comfortably watching television.
The truth couldn’t be further from reality.
Anyone whose illness is severe enough to keep them at home all day will often struggle to watch television at all.
For some people, the movement on the screen causes symptoms.
For others, the sound becomes overwhelming.
Personally, I can’t even sit up for long periods because sitting upright takes energy.
If my husband and I watch television, it is usually in bed and on an iPad screen.
Even then, it isn’t for long.
If I push myself too far, I start seeing quadruple images on the screen.
That isn’t boredom.
That isn’t laziness.
That is illness.
The Pain Nobody Sees
Tonight has been particularly hard.
I have been feeling different bones in my body hurting.
This morning it was the bones around my eye.
Now it’s my ribs and the bones in my foot.
I have pain every day, pain that I try to manage with medication, but this feels different.
The closest comparison I can think of is the pain you experience when you have flu.
That deep aching pain that seems to get into your bones.
The difference is that flu usually goes away.
This doesn’t.
Sometimes even sitting on the toilet can leave me in tears because it feels as though my body is severely bruised despite there being no visible bruise at all.
This is why it can be so frustrating when people describe ME as simply being tired.
It is so much more than that.
We Haven't Changed
This is the part I wish more people understood.
We haven’t changed.
Our lives have changed.
There is a difference.
Just because we can’t always attend the party doesn’t mean we don’t want to be invited.
Just because we have to cancel plans doesn’t mean we don’t care.
Just because our body won’t allow us to do something doesn’t mean we don’t desperately wish we could.
We still want to laugh.
We still want to socialise.
We still want date nights.
We still want to feel attractive, wanted, and included.
If it is your wife, husband, partner, son, daughter, parent, or friend who has ME, please remember that they are still the same person they were before they became ill.
Sometimes our bodies simply won’t let us join in.
That doesn’t mean we don’t want to be there.
Please don’t stop asking.
Feeling Like A Burden
If I’m honest, I don’t always feel like the person I used to be.
I don’t always feel attractive.
I don’t always feel wanted.
I don’t always feel like I bring anything to my relationship.
I don’t always feel like a good mum.
Some days I feel like a burden.
I find myself wondering whether Graham and Rebecca would have a better life if they didn’t have to worry about me all the time.
I know many people living with chronic illness will understand those feelings.
Before I became ill, I was always helping other people.
If my mother-in-law went shopping, I carried the bags.
If we were going somewhere, I made sure she came with us.
Before my father-in-law passed away, he asked me to look after her and I always did.
Now there are days when I struggle to look after myself.
That’s a very difficult thing to accept.
Why I Keep Writing
The reason I continue writing this blog is simple.
I want people to understand.
I want somebody who has ME to read these words and realise they are not alone.
I want family members, employers, friends, and healthcare professionals to see the reality behind this illness.
Every week I receive emails from people all over the world telling me how bad things have become.
Many tell me they feel isolated.
Many tell me they feel forgotten.
Many tell me they have nobody to talk to.
I want them to know that isn’t true.
I want to hear their stories.
The Toothache Analogy
Imagine going to the dentist with the worst toothache of your life.
The pain is keeping you awake at night.
You’ve tried every painkiller you can think of and nothing is helping.
You finally get an appointment and explain just how much pain you are in.
The dentist takes a quick look inside your mouth and tells you they can’t see anything wrong.
You try to explain that the pain is real. You know your own body and you know something isn’t right, but because they can’t immediately see a problem, you are sent home.
A few days later the pain is even worse, so you return.
This time they don’t even put you in the chair.
They remind you that they couldn’t find anything wrong during your last visit and reassure you that everything is fine.
No X-ray is ordered.
No further questions are asked.
No deeper investigation takes place.
They simply move on to the next patient and send you away.
You leave carrying the same pain you arrived with, but now you also carry doubt.
Maybe they’re right.
Maybe it is all in your head.
Maybe you’re overreacting.
Maybe you should just stop complaining.
Yet the pain is still there.
Months later, somebody finally takes the time to listen.
They ask different questions.
They investigate further.
They order the right tests.
Only then do they discover there really was a problem all along.
The pain was real.
The problem was real.
It simply wasn’t visible because nobody looked deeply enough.
For many people living with Myalgic Encephalomyelitis, that feeling is painfully familiar.
The symptoms are real.
The pain is real.
The exhaustion is real.
But when people stop asking questions too soon, or decide there is nothing wrong because they cannot immediately see the cause, patients are often left feeling unheard, unsupported, and alone.
That is why awareness matters.
That is why listening matters.
And that is why so many people with ME spend years fighting not only their illness, but the constant battle of trying to be believed.
Be The Difference
That’s why you have to be the difference.
Yes, YOU.
People living with ME don’t need the whole world to understand them overnight.
Sometimes they just need one person who believes them.
One person who listens.
One person who still sends the message.
One person who still extends the invitation.
One person who says, “I know you’re struggling, but I’m still here.”
It takes just one person to change somebody’s life.
Together We Can Make A Difference
I want to help educate the world about Myalgic Encephalomyelitis.
I want people to see the reality of this illness without filters.
I want to show that different doesn’t have to be frightening.
You don’t have to avoid us.
You don’t have to stop talking to us.
You don’t have to pretend we don’t exist because you’re worried about saying the wrong thing.
We are still here.
We are still fighting.
And together, I truly believe we can make a difference.
With love always,
Alisha ❤️
Frequently Asked Questions About Myalgic Encephalomyelitis (ME/CFS)
Clear answers to common questions about Myalgic Encephalomyelitis (ME/CFS).
What is Myalgic Encephalomyelitis (ME/CFS)?
Myalgic Encephalomyelitis (ME/CFS) is a complex neurological condition that affects multiple systems in the body, causing severe fatigue, pain, and a range of other symptoms.
Is ME/CFS just being tired?
No — ME/CFS is far more serious than normal fatigue and can significantly impact daily life and quality of life.
What are the symptoms of Myalgic Encephalomyelitis (ME/CFS)?
Symptoms can include extreme fatigue, post-exertional malaise, chronic pain, cognitive difficulties (brain fog), and sensitivity to light and sound.
Is there support available for people living with ME/CFS?
Yes — there are communities, organisations, and support networks that offer guidance, understanding, and connection for people living with ME/CFS.
How can I connect with others living with ME/CFS?
You can connect with others through online communities, support groups, and shared spaces where people understand the realities of living with ME/CFS.
You can also explore more detailed guides and support resources in my Symptoms & Support page →
You Don't Have To Face This Alone
If this article resonates with you, I would love to welcome you to one of our support communities.
These are the communities and resources I’ve created to help people connect, share experiences, and find support.
If you live with ME yourself or care for someone who does, there is a place for you here.
One of our longest-running support communities, bringing together people from across the UK and beyond who understand the reality of living with Myalgic Encephalomyelitis. A safe space to ask questions, share experiences and find support.
Meaningful conversations, virtual meet-ups and a welcoming community for people living with ME/CFS. A place to share your story, make friends and remember that you don’t have to face this illness alone.
Caring for someone with Myalgic Encephalomyelitis can be rewarding, exhausting and sometimes overwhelming. This community exists to support carers, partners, parents, children and friends as they navigate life alongside ME.
A positive awareness campaign bringing people with ME together through friendship, shared experiences and a little bit of humour. Because raising awareness doesn’t always have to be serious to make a difference.
Myalgic Encephalomyelitis Awareness Liverpool
Raising awareness of ME in Liverpool and beyond through campaigns, events, advocacy and education. Together we are working to make Myalgic Encephalomyelitis visible and ensure sufferers are heard.
Supporting disabled people through practical advice, accessibility guides, product reviews, disability news and real-life experiences. Whether your disability is visible or invisible, you’ll find information, support and understanding here.
You Might Also Find Comfort In These…
If you’ve ever found yourself rethinking what life looks like, you’re not alone. These are a few other posts where I’ve shared more of that journey…
Living With Myalgic Encephalomyelitis: The Battles No One Sees
Silence Saves: Why We Need Quiet Spaces
Rome – The Trip That Still Lives in My Heart
A personal reflection on missed moments, lost plans, and learning to live alongside disappointment.
What is Myalgic Encephalomyelitis ( A Simple Guide)
The things that have helped me navigate daily life—small changes that can make a big difference.
You’re not alone in this—whatever your version of life looks like right now.
Here are a few pieces that might help or resonate with you.
Take what you need, at your own pace.
Living With Non-Alcoholic Steatohepatitis (NASH): My Story, the Research, and What You Need to Know
ME Pyjama Party
The True Cost of Heavy Periods: Years of Bleeding Before My Endometriosis Diagnosis
Support, Community & Real-Life Understanding
Living with chronic illness can feel isolating — especially when your energy is limited and your world gets smaller.
Here, you’re not alone.
This is a space for real support, shared experiences, and honest conversations about life with ME/CFS and chronic illness — without judgement, pressure, or expectations.
Join us during ME Awareness Week and be part of something that truly matters.
Wearing pyjamas is something many of us already do — making this a simple, inclusive way for everyone to take part.
It’s time we gave ME a face.
Caring for someone with ME/CFS can feel overwhelming — especially when you’re trying to hold everything together.
This is a place to connect, share, and feel understood.
Real life with ME/CFS — the good days, the hard days, and everything in between.
Join me (and Alfie & Archie 🐾) as we share honest moments, real routines, and everyday life with chronic illness.
Stay Connected
If you’d like to follow my journey, connect with others, or be part of a supportive community:
– Follow me on Instagram
– Subscribe on YouTube
This is a space for real stories, honest moments, and connection.
You’re always welcome here.
