My life since my M.E. diagnosis at 17
By Hannah
My name is Hannah and on May 13, 2024, my life changed in a way I never could’ve seen coming.
There wasn’t a dramatic moment. No accident, no single day that split my life into a before and after. I didn’t fall, I didn’t break, I didn’t bleed. Instead, I was diagnosed with a chronic, life-limiting illness called Myalgic Encephalomyelitis, M.E. for short. Some people know it as Chronic Fatigue Syndrome, but don’t let the name fool you. This isn’t just tiredness. It’s a complete shutdown of your body and your life. It’s invisible but it’s very, very real.
Before M.E., I lived what I thought was a normal life. I went to school, worked long days, walked my dogs, stayed up late, laughed with my friends, helped cook dinner and then woke up and did it all again the next day. I was active, spontaneous, full of plans. I never had to think twice about how I spent my energy.
Now, every choice costs something.
If I have a shower and wash my hair, I might not have the strength to walk the dogs. If I go out with friends, I know I’ll be in bed for the next week just to recover. Sometimes I don’t even bother trying, because I already know the price and it’s too high.
M.E. is not just fatigue. It’s chronic exhaustion, no matter how much I sleep. Whether it’s 8 hours or 16, I wake up feeling like I’ve run a marathon. My muscles constantly ache; it feels like my body is dragging itself through sand. I get tension headaches that stretch across my skull, heart palpitations from standing up, brain fog so heavy it’s like my thoughts are underwater. My digestion is a daily battle. I’m sensitive to light, to sound, to movement. Some days, I have to lie in the dark in total silence, just to cope.
And still, people look at me and say, “But you don’t look sick.”
That’s the hardest part. The invisibility. From the outside, I look fine. I smile. I might post a picture. I might show up for a couple of hours. But people don’t see what happens after. They don’t see the crash. They don’t see the rest of the week, where I’m in bed, in pain, wiped out from the smallest act of pretending to be okay.
Being diagnosed wasn’t an easy process. It took me nearly seven years of pain and unanswered questions. I visited the doctor every week, experiencing new symptoms and constantly worrying about my health. I had years of viruses on and off from the first day of year 7, all through school and still, to this day I get many viruses when I exert myself. I had many symptoms every single day, some of which include temperatures, achey joints, headaches, digestive issues, throat problems, fatigue— the list goes on and on.
After giving up hope of ever being listened to by professionals, a new doctor referred me to an online M.E. team that spoke to me over the phone about my symptoms, how I’ve felt and how long they’ve gone on for and they instantly responded with “You have an illness called M.E.” In that moment I cried happy tears knowing I finally had an answer and could get help. It was like a weight off my shoulders and although it took me a while to get my head around it was so relieving to finally know what was wrong with me.
I ended up missing 2 out of 5 years of school in total because my body just couldn’t cope with 5 full days a week. I lost many friendships and felt very isolated during my school years and even now, having had this illness for such a long time I still feel isolated at times. I see people my age living their lives, going on nights out, going on holiday and I think to myself, will this ever be me? But there is still hope.
Even the smallest things become massive. A cold wipes me out for days. A spot on my face gets infected because my immune system can’t fight off even the simplest illnesses. My body feels like it’s constantly breaking down and yet I’m expected to carry on like nothing’s wrong. I grieve the person I used to be. She was so full of life. She could go all day, no limits, no calculations. Now, I plan everything. Do I push through, or do I rest? Do I say yes and suffer later, or say no and feel the guilt instead?
People ask, “But what do you do all day?” I want to ask them back: what does it take just to be okay?
Because this illness affects everything. Physically, emotionally, mentally. And it’s so lonely. There’s grief, and frustration, and sadness, and fear. Fear of being forgotten. Fear of being misunderstood. Fear that this is how life will always be.
But even in the dark, I’ve found something unexpected: strength.
Not the kind you see in movies. This is quiet strength. The kind that wakes up and keeps going, even when it hurts. The kind that rests without guilt (most of the time). That listens to a body that screams, “No more,” and still finds ways to exist, to survive, to feel. Strength that doesn’t always look like progress, but still counts.
My strength didn’t come from being pushed to recover, my strength didn’t come from the thought of suffering for the rest of my life; it came from knowing that no matter what happens or how I feel, my friends and family are always here and they will do anything to help me feel “normal”. I got 2 dogs to help with my mental health and they’ve been my rocks through these tough times.
Although it took my friends and family a while to understand and believe that what I was experiencing and how I was feeling wasn’t just in my head, my mum always knew there was something wrong even just by looking at me. Since my diagnosis, some family members have done their research and come with me to support groups to help them understand what I am going through.
This illness has taken so much from me, but it’s also taught me so much.
It’s proved a lot of factors of life shouldn’t be taken for granted: e.g. being able bodied and having “stable mental health.” But no matter how I look or feel my mum is always by my side cheering me on and I will forever appreciate her for that.
It’s also shown me how fragile life really is, and how strong people really are. It’s taught me patience and perspective. It’s made me notice things others don’t, like invisible struggles, small victories, and moments of peace that feel like gold dust: being able to shower, wash my hair and walk the dogs all in one day or going out with my friend for a meal and then to get my eyebrows done. It’s taught me that even when everything feels broken, there is still beauty to be found.
I do have some good days; they are outnumbered by the bad days, but I still sometimes manage to do basic everyday tasks. On my bad days I am still able to get up and dressed, brush my teeth and make myself food, but that’s about it. Whereas on my good days I can do all this and still have energy left to do the things I enjoy.
I didn’t choose this. But I do get to choose how I respond to it. And even on the hardest days, I choose to keep going.
Because I’m still here.
And I’m still me.
About the Author
Hannah is nearly 19. She’s learned how to live with illness and her favorite thing to do is play golf when she’s feeling okay. She hopes her story can help someone else in the same shoes feel more positive.