Welcome to You Don’t Look Sick, our weekly series about people living with invisible illnesses.
Each week, we discuss what it’s like being diagnosed with a hidden condition and how people cope with the judgement that comes when people can’t see your disability.
Fliss Mackay, 39, from Gateshead, Tyne and Wear, lives with chronic bowel problems, which has resulted in osteoporosis.
She started experiencing severe constipation and pain at the age of 18 and after trips back and forth to her doctor, she was eventually diagnosed with a lazy bowel, meaning it digests food much more slowly.
She had three surgeries and then a fourth one led doctors to discover that her bowel had collapsed.
Throughout her twenties, the pain continued and as she struggled to eat anything, Fliss was very underweight.
Her weight caused other problems including osteoporosis and her periods stopped around 12 years ago.
Five years ago, her pain got worse and she went back to her doctor but was told it was just something she had to live with.
In 2014, she suddenly collapsed in pain and was rushed to the hospital by a friend, where they carried out emergency surgery.
Fliss’ bowel had twisted because of the scar tissue from previous surgeries, causing parts of her bowel to die.
She had most of her small intestine, appendix and some of her large intestine removed.
Her doctors told her that she was hours from death and she spent two weeks in the hospital recovering.
The hairdresser says: ‘I got rushed to hospital. My bowel had basically burst inside me and part of it had died.
‘The surgeons said they had no idea how I was still alive because so much was just poisoned.
‘It was the worst thing that has ever happened to me but it’s brought me to where I am now.’’
Since then, her bowel problems have got worse and she also lives with nerve pain in her legs, caused by the emergency.
Now, after over 20 years of living with these issues, she has tried various things to try to manage the main and discomfort.
For Fliss, one of the biggest things that has helped is changing her diet. After her time in hospital, she started following a plant-based diet and as she researched it further, she committed to a fully vegan diet.
She took it further, following a raw diet for a few months and now follows a mainly whole food vegan diet, which means she only eats unrefined and unprocessed foods, focusing mainly on fruits, vegetables, whole grains, beans, legumes, nuts and seeds.
‘My diet has made a huge difference. I have always had a healthy diet and only ate chicken and fish before but even just cutting that out and following this diet has helped me be able to eat more.’
At the minute, Fliss’ bowel muscles are deteriorating and she could face getting an ileostomy bag in the future.
She is currently trialling an irrigation system where she ashing her bowel out herself every morning.
She says: ‘I have wanted a bag for quite a few years now but I am frightened about having more surgery.
‘The thought of going through recovery is really difficult for me.
‘I have been speaking to people on lots of support groups with an ileostomy bag and I am feeling better about it.
‘We need to wait three months to see if the irrigation system is something I can do long term. I hate doing it because it is disgusting and it hurts but I will do it if it means I don’t have to have more surgery.
‘Some days it makes a difference and other days it doesn’t.’
Fliss has lived with her problems for many years and in that time, she has faced judgement for using disabled bathrooms when she urgently needs the bathroom.
She explains: ‘A few months after my surgery, I flew down to Bristol and when I was getting on the plane, I really urgently needed to go to the toilet.
‘I was rushing past someone and she said: “I don’t know why you are rushing – we are all going in the same direction.
‘I was embarrassed but I just kept going. When I came out she was waiting to go in.
‘I just turned and said: “I’m sorry I walked past you so fast but I had life-saving surgery and I really needed the toilet so sorry if that upset you.”
‘I could see she just shrivelled into a ball but I just washed my hands and left. I was so glad I tackled it like that.’
Living with these problems has also impacted her mental health and Fliss has various things in place to help her cope when she is struggling.
‘I do yoga every morning,’ she explains. ‘Sometimes it doesn’t help much with the pain but it just makes me feel better when I am doing them. That really helps me mentally.
‘I am riddled with anxiety from the minute I wake up because I am worried about what is going on with my body.
‘Being in work and around my clients really helps. I do have my moments where I am really sick of it but you just have to get on with it as much as you can.
‘I have got used to managing. I do have support from family and friends. They have been amazing throughout but it is hard for them to understand this if they have not experienced something like it.
‘I have started going to pain management groups but one of the best things for me has been talking about my problems on social media.
‘I have a YouTube channel where I discuss my journey and that has been a massive comfort.
‘I just want to be more open about chronic illness and bowel problems. Many people need to be more aware of their choice of words and actions. People just don’t get how difficult it is living with something like this.’
How to get involved with You Don’t Look Sick
You Don’t Look Sick is Metro.co.uk’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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