What It Really Feels Like to Live with ME
I never imagined I’d start a blog post from my bathroom, but here I am. It’s not the oddest place I’ve ended up while dealing with Myalgic Encephalomyelitis (ME)—a condition that strips away normality and replaces it with unpredictability, isolation, and exhaustion.
These past few weeks have been brutal. I’ve passed out, fallen, developed unexplained bruises, and experienced worrying swelling in my lips and mouth. Every new symptom adds to a growing list of fears. And yet, what terrifies me more than anything is not knowing what’s next.
Each calendar appointment—each visit to a GP or specialist—feels like a potential turning point. Will I be told something devastating? Will this be the day everything changes again?
The Mental and Emotional Toll of ME
ME doesn’t just take a toll on the body. It chips away at your confidence, identity, and relationships. There are nights when I lie beside my husband and cry silently, brushing off the tears as hay fever. On the outside, I seem okay. But inside, I’m struggling. This illness doesn’t just exhaust your muscles—it breaks your heart.
Loneliness is a huge part of life with ME. I often find myself questioning whether I’m somehow being punished, whether I’ve done something wrong to deserve this isolation. But deep down, I know I’m not alone in this feeling. Thousands of us with ME are grieving the life we had, while trying to hold on to the slivers of joy that remain.
To those who think ME is just about being tired: you couldn’t be more wrong. Imagine being so drained you wouldn’t lift a finger even if a film star turned up at your door with a diamond ring. That’s not laziness—it’s total system shutdown.
The Daily Reality of Myalgic Encephalomyelitis
Every part of my day is dictated by my illness. I don’t lie on my left side all day because I enjoy it—it’s just the only position I can tolerate. Even then, it’s not comfortable. There is no comfort with ME.
I’ve missed so many important moments: weddings, funerals, birthdays, even my daughter’s university graduation. ME is a thief. It steals not only your energy, but also your memories and milestones.
The pain is constant, sharp, relentless, and silencing. I’ve become skilled at hiding it, but there are days when the mask slips and I’m left clinging to tissues, overwhelmed by exhaustion and grief.
Living With an Invisible Illness
Not long ago, I read about a woman who travelled abroad to access assisted dying. She said it was the only way she could reclaim her life. As heartbreaking as that sounds, I understand it. When every day is spent in silence, confined by pain, even hope can feel out of reach.
I can’t clean myself. I can’t cook or visit loved ones. Even reaching out to my husband or daughter fills me with guilt, because they worry I’m in crisis. And sometimes, I am.
It hurts to admit, but there are days when I question whether they’d be better off without me. I see the strain in my husband’s face, feel the weight of my daughter’s sadness. That’s the brutal truth of living with an invisible, incurable illness: it affects everyone you love.
Still Fighting, Still Hoping
Despite it all, I still want to live. I still dream of regaining control over my life. I want to lose weight, rebuild my confidence, maybe even restart my career someday. But ME makes even the simplest task feel insurmountable.
Why weight gain impacts self-esteem
Taking a shower drains every ounce of energy I have. My medications leave me flushed, sweating, and swollen. And the weight gain that follows? It crushes my already fragile self-esteem. Body image struggles are rarely talked about in the context of chronic illness, but they are real—and they hurt.
The limits of care support for ME
I can’t exercise. I can’t cook nutritious meals. Even when I had carers, they weren’t available during the hours I actually needed help. ME doesn’t follow a schedule, and unfortunately, most care systems do. That leaves many of us trapped—mentally, emotionally, and physically.
I’m stuck. And yet, I’m still holding on.
Because I want to make a difference.
Because I want to raise awareness.
Because maybe—just maybe—my words can help someone else feel seen.
You Are Not Alone in This Fight
Living with Myalgic Encephalomyelitis is one of the hardest things I’ve ever faced. It’s a silent battle fought behind closed doors, in dimly lit bedrooms and quiet tears. I don’t have all the answers. But I have a voice—and I will use it to speak up for those of us who are often forgotten.
If you’re reading this and you’re struggling: please know you’re not alone. Your pain is valid. Your story matters.
We may be physically isolated, but together, we are a community. A strong one. One that refuses to be silenced.
You can contact me directly if you need someone to talk to—reach out here.
Visit my YouTube channel for more about life with ME.
Helpful Resources
ME Research UK
– Over 250,000 people in the UK live with ME/CFS. Learn more: ME Research UKNHS ME/CFS Information
– Official guidance and support: NHS ME/CFS
I am always here if you ever need to talk,
Love Always
Alisha ❤️
