Do you know someone with an invisible illness? You probably do about the symptoms they deal with because they don’t look sick.
Our weekly series about hidden conditions and disabilities talks to people living with them about how they cope, as well as the judgement they face because of how they look.
Chris Stennett, 26, from Felixstowe, Suffolk, has Facioscapulohumeral Muscular Dystrophy.
Facioscapulohumeral muscular dystrophy (FSHD) is a genetic muscle-wasting condition that causes muscles to weaken and waste over time leading to increasing disability.
It affects the muscles of the limb, shoulders and face and the level of impact varies between people with the condition.
Currently the condition, which affects around 2,500 people in the UK, has no cure and there is limited research into it.
Chris had spent years wondering what was happening to his shoulders and he was eventually diagnosed in January 2019 through a physical assessment.
He also had a genetic test to confirm his diagnosis in April 2019.
For years people would say things like ‘Are you scared of the bench press?’ or ‘pull your shoulders back’ or tell him he has bad posture.
He explains: ‘These are things I have heard repeatedly all my adult life. Now I know it was for good reason: I have Facioscapulohumeral Muscular Dystrophy.
‘I realised about six years ago that my chest muscles had vanished as well as any kind of scapular stability in my back, and that I was getting a lot of impingement in my shoulders.
‘I went to physio but they made my issues worse so I went without and managed it myself with less pain and improved strength over time, but still without having “proper posture” or chest strength / size.
‘Having played rugby for 13 years, and with the accompanying tremors in my shoulders and arms, I always assumed that my shoulders or neck had taken a hit somewhere and damaged nerves to certain muscles, or that I had simply trained myself into a less-than-ideal state.’
Chris suffered a third dislocation in his shoulder area in 2018 and went to a physio. There he was referred to a neurologist and was eventually diagnosed with the condition.
When I was diagnosed, the first time, I was stunned and curious about what it was and how much I needed to learn about it.
‘After the second confirmation from the genetic test, I felt overwhelming sadness and fear for the future.
‘I had built up a lot of insecurity over my structure and it would have only gotten worse if the problem wasn’t identified.
‘There is no cure, which puts it in perspective that I only have a finite amount of athletic physical ability left in me. This is true for all of us, of course, but FSHD could claim mine at any time.’
Between 10 to 20% of people with FSHD eventually need to use a wheelchair as the muscles weaken more and more but others don’t even realise they have the condition until they are well into old age – the impact it has varies hugely from person to person.
Right now, Chris doesn’t need to take medication and it doesn’t have much of an impact on his ability to carry out day-to-day tasks.
He says: ‘I do not feel weakened by this disease. I learnt to adapt around my limits before I knew what it was, and the identification of the problem has absolutely resolved my insecurities around my body structure.’
He does get tremors through his left arm and side from his neck to his hip.
He adds: ‘They are the worst thing I currently but are a lot more manageable now I have looked into it with other FSHD sufferers, and now I take supplements with a lot of electrolytes.
‘I do a lot of exercise and it gets me some days still. It causes a great deal of discomfort and stress.’
Chris has found support through talking about his condition online in support groups for people with FSHD, but he has found it much more difficult to discuss it in real life.
He adds: ‘Talking to other people online definitely helped me overcome the shock of the diagnosis – they get it.
‘We have a great online “family”, that support one another emotionally and answer curiosities. I got the electrolyte tip from this platform which helps a huge deal.
‘In real life, some people have said they have never noticed, which is odd because my posture is horrible.
‘Me “coming out” as such with this disability to somebody who is not either close to me, a healthcare professional or someone else with FSHD, is only something I have done very recently.
‘The only reason I did was to highlight why I am raising money for Muscular Dystrophy UK, before this I was still dealing with it personally.’
Chris found the charity while trying to find more answers about what living with FSHD would mean.
Inspired by the word that they do, he is now training for an Ironman triathlon to raise money for Muscular Dystrophy UK.
Before his diagnosis, he’d always planned to complete the hardcore race, which consists of a 2.4 mile swim, a 112 mile bicycle ride and a marathon, run without a break, completed in one day.
He explains: ‘I don’t see why the plan should change. I confess I thought I may be able to fix my shoulders by then too, but they’ll have to do.’
The race will be completed in Klagenfurt, Austria in July 2020.
He hopes to raise more awareness of the condition to show others how he has continued to live his life despite his diagnosis.
He says: ‘I have FSHD. Not only does it not have me, but I am empowered by it.
‘We need more education and awareness of invisible illnesses. You never know what someone is going through and many do not realise the types of issues out there or how lucky they are not to have one.’
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 youdontlooksick@metro.co.uk.
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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