Each week, for our You Don’t Look Sick, we speak to someone living with an invisible illness about what it’s like living with a condition that can’t be seen from the outside.
This time, we’re with Rebecca Chapman, 28, who has Crohn’s disease- a bowel condition where parts of the digestive system become inflamed.
It causes pain, fatigue, difficulty digesting food and frequent trips to the toilet, among other symptoms.
Rebecca was first diagnosed in December 2014.
The yoga teacher and restaurant supervisor from Southend-on-Sea, Essex, was going to the toilet more, suffering from stomach ache and was losing weight.
A blood test also showed that she was anaemic (low iron levels) and her GP suspected Crohn’s disease.
She was referred for a colonoscopy, where a thin flexible tube with a camera inside is placed inside the body through the bottom. The test confirmed that she had the condition.
Rebecca had never heard of Crohn’s and admits that she thought she just had to take medicine and it would get better.
She explains: ‘Everyone said it couldn’t be cured but I thought they were wrong. When you’re younger you always think you know better, which I obviously didn’t. I felt a bit confused.’
But Rebecca soon realised that this is something that would affect her for the rest of her life.
She has periods where the condition is under control but when she suffers a flare-up, she struggles to eat, is in severe pain and can have bowel movements up to 25 times a day.
She explains: ‘On a bad day, I wake up early around 4 am as I need to have a bowel movement. I can’t fall back to sleep because of the pain or side effects from medication keeping me awake.
‘I take strong painkillers throughout the day, use hot water bottles to try to help and peppermint tea – anything to soothe the pain.
‘8 am rolls around and I have more painkillers and medication. I go back to bed and maybe watch Netflix or play a game on my phone to try and distract me from the pain – going out of the house or exercising is out of the option as I’m too weak and tired to move.
‘I don’t have breakfast as pain after eating is too much to bear. Around noon, I’ll have a nap, which will last until 5/6 pm.
‘I won’t wake up in between unless I need the toilet as I’m too fatigued. I’ll wake up and have painkillers, medication and toilet trips.
‘My joints will ache and I have headaches but I struggle to eat food as it’s too painful.
‘At night I’ll try to have a dietary shake that the doctors have given me to keep my calories and nutrition up, or something soft like mash potato or soup – we don’t want to aggravate the inflammation in the intestines.
‘I’ll have more painkillers and just sit in bed or on the sofa as moving is too painful and too tiresome. At 10 pm, it’s bedtime – drugs to make me sleep and more painkillers. Then I will wake up it will start all over again.
‘Sometimes I will not go to work for a couple of weeks when having a flare as it would be too much for my body to handle.’
On a good day, Rebecca still needs medication and goes to the toilet more often than most people but she can get on with work and day-to-day life.
She had a small bowel resection surgery four months ago that has helped with her condition and she is currently in remission but another flare could happen at any time.
Dealing with the condition has been difficult for her but she says she has an incredible amount of support from friends, family and the online Crohn’s and Colitis community.
She explains: ‘I have amazing family and friends which have taken the time to learn about my illness and care for me whilst I’m having a flare-up.
‘I also have an amazing team at Southend Hospital. They are always on hand so I can contact them whenever and they will usually get back to me that day.
‘Instagram is also a very helpful place for people with Crohn’s and colitis or other autoimmune diseases as so many people blog their journey of illness.
‘It’s great to connect with others and even get some advice. It helps to talk to people who are in the same situation as you and who understand.’
Rebecca also says that working as a yoga teacher has helped her cope with her illness and the frequent pain she experiences.
She says: ‘I like to meditate and use breathing techniques to help with the pain and general unwellness that takes over me.
‘Doing these breathing techniques and meditation also breaks up the day and makes me feel like I have done something with the day and accomplished something, which is difficult when you’re housebound from fatigue and pain.’
But Rebecca says that even when she is at her most unwell because her illness is invisible, most people don’t realise there is anything wrong.
She says: ‘I get “you don’t look sick” loads, especially when I’m having a flare-up. People say: “You look great you have lost weight”. I say I would rather be heavier than be ill, but people don’t understand, they see it as a great side effect. If they could see me in pain they wouldn’t be saying that.
‘People try to sympathise by saying they have had the runs so they know how I feel. All I can say is that it’s not the same. No one understands the pain you go through when your body is sabotaging itself!
‘It not just the toilet trips – it’s everything else the disease throws at you, as well as extra side effects from medications.’
Although Rebecca admits it can be embarrassing to live with Crohn’s, she is determined to speak out about the condition to help people understand more about it.
‘People need to grow up and have a mature attitude towards inflammatory bowel disease and the side effects that come with it,’ she says.
‘People who blog or post about the journey are doing a great job, and overall there is much better awareness now than there was when I was diagnosed.
‘Crohn’s and Colitis UK do a great job of raising awareness for the illness obviously and putting on their events help.
‘The UK is changing and even now there are signs which showcase that not every disability is visible. Things are slowly getting better but it’s so important for people to be knowledgeable about this.’
Rebecca posts about life with Crohn’s on her Instagram.
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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