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You Don't Look Sick: 'People say ME isn't real but trust me – it is'

Over 13.9 million people living in the UK are disabled, but many people live with conditions that you can’t always see.

They struggle with symptoms every day but when you see them in the street, you would have no idea that anything is wrong.

You Don’t Look Sick is our weekly series about living with invisible illnesses and disabilities.

Each week, we speak to someone with a hidden condition to explore what it’s like to face judgement because they look ‘healthy’ to the outside world.

Jenny McGibbon, 24, from Stirlingshire has Myalgic Encephalomyelytis (ME), also known as Chronic Fatigue Syndrome (CFS).

She is one of over 250,000 people in the UK  living with the condition, which is caused by a dysfunction of the neurological, immune and endocrine systems as well as the metabolism.

It causes a range of symptoms, including extreme tiredness that gets worse with just a little bit of exertion.

Although her symptoms mean she struggles to leave the house, Jenny admits she feels uncomfortable using disabled facilities because of how she looks.

Jenny was diagnosed in 2014 but has dealt with a range of health conditions throughout her life.

She was born with a birth defect called Gastroschisis, where the intestines grow on the outside of the body.

Although doctors were able to operate to place them inside her body, it meant she had short bowel syndrome, which means the body struggles to absorb food.

When she was 16, she developed chronic internal bleeding and iron deficiency. Three years later, Jenny’s health deteriorated and when treatments weren’t helping her to feel better, she realised something else was wrong.

As there isn’t a diagnostic test for ME, Jenny had to wait for doctors to exclude other conditions before she was told she has the condition.

She explains: ‘I had to fight with doctors to be taken seriously as they thought I was young and exaggerating. My hematologist at the time even told my Mum that I was fine and to stop dragging me around hospitals.

‘I found out about ME online and knew immediately within myself that this is what was wrong with me. Eventually I received the ME diagnosis from a specialist.

‘I initially felt relief to finally have a name for what I was dealing with. I could find other sufferers online and I felt less like a fraud now that I had a proper diagnosis.

‘However that initial relief quickly turned into frustration when I realised the severe lack of funding and understanding for the condition. I thought I would get help after a diagnosis.

‘I thought that would be the biggest hurdle and then a doctor would fix me. Unfortunately not.

‘ME sufferers are often left to their own devices, stumbling about in the dark. Research hasn’t caught up yet so even though I have an understanding GP, there isn’t all that much he can do for me.

‘There’s no current cure or treatment for ME, only symptom management (eg. painkillers). It feels like it’s up to me to “fix myself”. It can feel a bit like I’m having to do it on my own.’

Although some medication can help Jenny to manage her symptoms, her condition impacts every part of her life.

What are the symptoms of Myalgic Encephalomyelitis (ME)?

Symptoms include:

  • Post-exertional malaise a reduction in functioning and a severe worsening of symptoms after even minimal physical or cognitive exertion
  • Orthostatic intolerance (OI) – the inability to correctly regulate blood pressure, cerebral blood flow and consciousness when upright
  • Cognitive symptoms – confusion, difficulty retrieving words, poor working memory, spatial instability, and disorientation
  • Unrefreshing sleep
  • Pain in the muscles and joints
  • Headaches
  • Sensitivity to light, sound or vibration, taste, odor or touch
  • Gastrointestinal symptoms such as nausea or abdominal pain
  • Muscle fatigability, weakness and fasciculation; poor coordination and ataxia
  • Poor temperature regulation, cold or heat intolerance
  • Immune symptoms such as tender lymph nodes, recurrent sore throats, fevers, or flu-like symptoms, and new food or chemical sensitivities

She is currently studying Visual Communication at college but has to do a lot of work from her bed as leaving the house makes her symptoms worse.

‘Day to day my whole life is run by my ME, it impacts every aspect,’ she explains.

‘I can’t shower, wash my hair, get dressed or make myself all my meals. I can wash my hair at most once a week. I always shower with a shower chair.

‘Normally I don’t leave my house more than one day a week and that’s usually to go to college. I end up having to do a lot of my work from my bed because I can’t physically make it to class. It’s a struggle.

‘To be honest my day to day life is normally difficult from the moment I wake up until the moment I go to sleep.

‘I’ve gone weeks in the past without stepping over my front door. It varies all the time.

‘I get good days sometimes where I can go out, and I love to go for short walks when these days do occur. I miss being outside in the fresh air.

‘If someone were to see me on one of these walks they’d think I was healthy, albeit maybe a bit unfit with all my heavy breathing. If only they had any idea of what the rest of my life looks like.’

Even now, five years on from her diagnosis, Jenny sometimes struggle to accept living with a chronic illness.

She explains: ‘Coping with ME comes in waves I find. Sometimes I’ll have months where I feel like I’ve finally accepted it. I take it for what it is and try to move forward as best I can.

‘That’s how I feel at the moment but sometimes I have months where I’ll cry about it every day. It’s a rollercoaster but I think that’s the same for everyone in my situation.

‘If you’re dealing with it for long enough it’s bound to get to you sometimes.’

Jenny received a lot of support from her boyfriend, friends and family but says that the online communities of other people with ME have really helped her to come to terms with and understand her illness.

‘I’m lucky enough to have a supportive family and boyfriend. I have a couple close friends that have stayed around too,’ she says.

‘I’ve found the online community of other chronic illness sufferers to be a massive help. I don’t know what I would do if I didn’t have that. They bring me a lot of comfort.

‘My family all try to understand but it takes someone who’s been there to truly get it.

‘Organisations such as the ME Association have been a big help to me as well.

‘I think there’s a lot of people with invisible conditions doing amazing work online trying to raise awareness. We’re all doing our best to show what things are really like, to increase awareness and ultimately funding for research.

‘It’s just a shame it’s often left up to the sufferers and their loved ones to do so.

‘Every time someone reads, likes, comments or shares one of my online pieces from my blog This Thing They Call Recovery, I feel like we’re getting the word out there that bit more.

‘I think our healthy counterparts often feel like they can’t help us because they can’t “fix” our health problem. But really just by talking about it you’re helping. Getting the word out there will have a knock on effect.

‘That’s where we need to start. There can’t be a cure or treatment without research. There can’t be research without funding. And there will never be enough funding if people haven’t heard of ME, or even worse – have heard of it but don’t believe in it. Trust me, it’s so real.’

How to get involved with You Don’t Look Sick

You Don’t Look Sick is’s weekly series that discusses invisible illness and disabilities.

If you have an invisible illness or disability and fancy taking part, please email [email protected].

You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.

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