‘But you don’t look sick’ is something that people with chronic illnesses often hear.
Others judge them based on their idea of what disability looks like.
Our series speaks to a different person each week about their experiences of living with a long term condition and how other people treat them.
Colette Morgan, 29, from Nottingham, has coeliac disease, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and most recently, was diagnosed with complex regional pain syndrome.
Living with chronic illness has also contributed to Colette developing anxiety and depression.
Although she has experienced chronic illness she was diagnosed with CFS/ME as a teenager, her health had improved until surgery on her right ankle in February 2018 triggered CRPS.
CRPS is a rare condition where the body responds abnormally to an injury, causing pain that is persistent, severe and lasting much longer than usual.
Colette had planned surgery on the lateral ligaments in her ankle after an injury and she was hopeful it would allow her to run again.
Unfortunately, her ankle didn’t heal as expected and instead she soon found she was unable to put weight on it and it became discoloured and swollen.
She was diagnosed with CRPS in July 2018, five months after her surgery, after a series of tests and examination by orthopaedic surgeons, neurologists and a pain clinic.
Colette tells Metro.co.uk: ‘I was really upset, confused and frustrated. I had the surgery on my ankle to repair an injury in the hope of being able to keep fit and active, but instead, I developed an extremely painful and life-changing condition which severely limits my mobility and impedes daily activities.
‘Before being diagnosed I hadn’t heard of the condition and had no idea how it would affect my life.
‘I did have experience of chronic illness due to having CFS/M.E as a teenager, my health had gradually improved over time, it was frustrating to think that I would lose all of the progress I had worked so hard to makeover time.’
Now Colette needs crutches to get around her house as she cannot walk on her ankle and she uses a powerchair when she is out and about.
Since her condition developed, her life has been turned upside down and she has lost a lot of independence.
She explains: ‘I typically wake up feeling unrefreshed and in pain, I take medication upon waking up and then rest until it takes affect and I feel able to get up.
‘I need crutches to move anywhere around the house as I cannot weight bear on my right ankle, this makes moving around quite slow and wobbly. When I leave the house I tend to use a powerchair as both CPRS and CFS/ME means I get tired very quickly.
‘I usually only leave the house every couple of days, typically for medical appointments and chores rather than fun stuff!’
Colette had lived with depression and anxiety as a teenager but has struggled again with her mental health since developing CRPS.
This means that as well as the physical difficulties of leaving the house, she doesn’t like to go out without her boyfriend or parents.
They have been a huge support as she deals with all her health conditions.
She says: ‘My family and friends are great. I need a huge amount of help around the house from my lovely boyfriend; from helping me to shower to cooking, fetching things and cleaning.
‘Even on a ‘good’ day I need quite a lot of rest and to only do low energy activities like watching tv or simple crafts.
‘On bad days I will be in huge amounts of pain and unable to do much more than sleep or nap on the sofa.
‘I will require extra support from my boyfriend to bring me food and drinks etc. I take eight different medications daily, these do have side effects which can cause additional fatigue and brain fog.’
CRPS also causes extreme sensitivity in the affected area, meaning that anything touching her leg can cause extreme pain.
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Six months ago I had a surgery thinking I’d be able to run again. I’d booked a place at The Great North run and though easy, 7 months recovery, I’ll be fine. Six months on and I’m far from fine; I’m now the proud owner of a very expensive adapted car, two sets of crutches, a shower chair, a blue badge and enough medications to sedate a rugby team. It’s utterly shit. I try to be all positive but life is fairly crap. I cry allot. I don’t have a social life and my idea of fun is visiting a new hospital department. So yeah. Fuck this.
‘I struggle with clothing and footwear,’ she says. ‘I can’t tolerate tight socks or tights on my affected foot as it triggers pain.
‘I have to dress warmly as I don’t regulate my temperature very well and getting cold causes more pain.
‘I can only wear certain shoes as anything too tight-fitting causes pain. My foot is also permanently swollen. I now need shoes a size and half bigger than before.’
Although Colette now uses mobility aids all the time, she says that people still say things like ‘you don’t look sick’ because to most people, she looks healthy.
She says: ‘I have had people say I am too young to be disabled and infer I ought to be walking etc instead. I typically just brush it off.
‘If I am out and about using my crutches I get a lot of comments and questions, people make the assumption that I have a sports injury or temporary condition.
‘I find these questions really intrusive and quite upsetting; it is hard to then explain to people I have a permanent condition.
‘If I use my powerchair I don’t get as many comments, but people will then often ignore me and just talk to my boyfriend rather than me.
‘I do worry that people will judge me for using a powerchair when I can still move and use my legs, I get self-conscious about stretching or fidgeting with my legs.’
Colette talks about her conditions on her Instagram @complexlycolette and says that meeting people from the chronic illness community online has helped her feel less isolated.
She adds: ‘It just helps to be in touch with others who ‘get’ what I am going through.’
Throughout November, she is posting about living with CRPS for the awareness month associated with the condition.
She wants people to understand more about her condition and chronic illness in general.
She says: ‘My use of mobility aids makes my disabilities more visible, but I do feel people ought to be more empathetic towards those with hidden illnesses.
‘Too often there is an assumption that just because a person is younger, they can’t be disabled.
‘Things are beginning to change, but more does need to happen.
‘I also struggle with accessing a lot of places, too many shops/bars/restaurants have steps into the premises and do not provide any form of ramp or way for wheelchair users to access the building.’
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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