Inside the isolation caused by ME/CFS hypersensitivity

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I find hypersensitivity one of the hardest ME/CFS symptoms to cope with as it can be so isolating. Hypersensitivity comes in many forms: hypersensitivity to light, touch, noise, smells, vibrations, foods, medication, chemicals, heat, cold and irritants like pollen and dust. All of these things can cause pain, nausea, fatigue, headaches and migraines. The slightest stimulus heightens our senses and causes palpitations, sweats, tinnitus, dizziness, chest pains and difficulty breathing.

The only way to avoid this pain, and the scary symptoms that accompany hypersensitivity, is to avoid contact with the stimulus that causes the harm – this is the isolating part. I have no option but to live in a darkened room. I have to avoid noise, strong smells and touch from loved ones. My sense of smell is so acute at times, I can smell a bar a chocolate from the other side of the room – not the best superpower but it’s quite impressive. My diet is so restricted and I am unable to take most prescription medication which may be able to relieve some of my discomfort. Loud noises like fireworks are unbearable and traumatic.

But the world is a busy, smelly, noisy place. If I have to leave the protective cocoon of my room for hospital appointments, I am met with an onslaught on my senses – a sensory overload. It feels like a million people are shouting at me from all directions. It’s not just painful and exhausting – it’s terrifying. My heart races and I feel like I’m going to collapse – I want to run and hide but I freeze on the spot, terrified. The pressure builds up in my head, I feel like it’s going to explode. It’s frustrating because people don’t understand the damage their actions can cause, and quite how traumatic it can be.

Imagine a life spent avoiding human contact because you are too scared of the consequences. Imagine a life where the softest touch from your partner causes you to flinch with pain. Imagine a life where your care workers perfume makes you so ill you are unable to function for hours. Imagine a life where you fear sunlight and spend your days hiding in a room darkened by black out blinds (I used to read books about vampires all the time – now I have become one). Imagine a life where you have to wear earplugs even in the most quiet environments. Imagine a life where you can’t watch TV or listen to your favourite music because it’s too painful and exhausting. Imagine how isolating this life is – it’s very easy to feel alone and forgotten.

I have always been a very sociable person. I used to thrive in busy environments and I loved being surrounded by large groups of friends. I was always the life and soul of the party, but now this scenario feels me with sheer panic. I miss human interaction. I miss being surrounded by friends, I miss being carefree.

So the next time you visit a friend who suffers from ME/CFS, please consider what you are bringing into their environment. If possible, don’t wear perfume – even your washing powder could cause your friend harm. Lower your speaking tone down a couple of notches. They may be too sensitive to give you a hug or to tolerate any physical contact, so please ask first. Be prepared to sit in the dark while you chat. And please, no sudden movements – these can set of the same symptoms. But most importantly, please do NOT avoid visiting or speaking to your friend just because you are afraid you will cause them harm. We still crave human interaction and your visit could give them the mental lift they need to fight another day. A few adjustments in your behaviour can make a big difference.

When my best friend comes to visit me she always leaves saying; “I feel so bad, I know I have exhausted you”. Yes, it will take me days to recover from her visit but the memory of her smiles, stories and kind comments will last much longer. Feeling “normal” even just for a few minutes is often worth the payback. Human interaction is vital for our mental wellbeing and it helps us to feel less isolated and alone.

If you are someone that regularly visits a friend suffering with ME/CFS – thank you, your presence will mean much more than you will ever know. Take care.

I know hypersensitivity and sensory overload are symptoms of other medical conditions too. Does anyone else experience hypersensitivity? If so, what form does it take? What coping strategies do you have?

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  2. Jo Moss
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    1. My hypersensitivity has got worse as my physical health has deteriorated due to ME/CFS. However, hormones definitely increase my hypersensitive. I’m 43, yet to go through the menopause, but when I’m premenstrual or menstrual, I definitely suffer more.

  1. Great post Jo! It really is difficult to be so hypersensitive, especially because as you say, “the world is a busy, smelly, noisy place.” The smells are the worst for me. I can almost always count on coming home with an excruciating headache when I’ve been out in public. I’m sorry to read that yours are so severe; I know it must be extremely difficult for you. You included some great tips for friends who visit. Thanks for sharing!

  2. So relatable! Thank you for being able to articulate the highly sensitive skills of someone with invisible illness. Sending support across the pond.

  3. I have suffered from ME/Cfs/Fibro for most of my life, thought it started after falling off a horse aged 15 but flashback to when I was younger put it back further.
    My symptoms are bad but not as severe as yours.
    I have not met you and others like us but the worse thing that has happened to me is not the ME itself but how people don’t understand what it is and how it affects our lives. I have lost several friends who were my besties who just drifted way, maybe they would have anyway but both happened at different times and at my worse painful moments.
    I’m wide awake with my left hand on fire with pain at 2.25 am in the morning. People without pain are fast asleep. My life is lonely and lots of times I wish I wasn’t here but I’ve lived this life with ME without being told what I had, until 9 years ago, I’ve fought to be here yet my battle goes on. I’m 63 years old.
    I want to send you a virtual hug to show you I understand your pain. We are all here for you with our love and hugs xx Karen

    1. Thank you for the virtual hug Karen. I’m sorry you suffer with ME too. I have also lost many friends, but I have two that have stood by me and we are closer than ever. Take care x

  4. I dont have M.E/CFC but i have M.S, one of my sisters has C/F\S, the other sister has FIBRO so we are a family of hypersensitivity. Loud noises, unnecessary noise ( tapping, whistling, humming etc) Fireworks , Supermarkets infact anywhere busy, strong smells, bright lights, medical appointments have a detrimental effect on all of us. Leaves us fatigued, in pain, unable to function.
    My life is definitely more anti social these days. I avoid a lot of situations which i use to enjoy. Most friends have stopped asking me to go out socially with them . Best friends understand. Having a chronic medical condition is an everyday struggle. I find the only thing that remedies my hypersensitivity is to sleep 😴
    I sleep a lot.
    Sending u gentle hugs. I hope its okay to follow your page without having CFS myself. I find your page/blogs so interesting and can relate to so much of what u say. Thank you for your writing.

    1. Thank you for your response Donna, and your hugs – sending hugs back. Hypersensitivity seems to be a symptom of many different chronic illnesses, I just wish it was more understood by healthy people. My blog isn’t just about ME/CFS, it covers a whole host of subjects and everyone is welcome.

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