Five years ago, I never would have considered sharing so much of my life. My Facebook posts were infrequent one-liners. My travelling blogs were only shared with our closest. I wondered why people overshared or posted so many photos or disclosed all the tiny daily details. Ultimately a private (and slightly insecure 🙂 ) person, I felt uncomfortable at the thought of others judging my life. But then I got ill, and I had to rethink my views and thoughts.
It took me eight long years to get diagnosed with Pulmonary Hypertension. Eight puzzling years of seeing every GP in the large doctors’ surgery. Eight confusing years of my breathing difficulties being downplayed and dismissed. Eight baffling years of knowing something was amiss, but never getting an answer. I don’t blame my old GPs. I never have. I was describing PH symptoms to doctors who had never heard of PH. There is very little awareness of Pulmonary Hypertension in the medical profession- in fact in a four year medical degree, barely an hour is devoted to the disease! Furthermore throughout training, doctors are encouraged to ignore the possible rare diseases and assume it is the more common conditions- meaning it is always misdiagnosed first (“When you hear hoof beats, think of horses not zebras”). It is therefore unsurprising, that the majority of people with PH take longer than a year to get the correct diagnosis, and only after seeing multiple different doctors first. It is unsurprising that the majority of people with PH only get the correct diagnosis when their condition is so far advanced, that they are admitted to hospital as an emergency. So although I don’t blame my GPs for being unable to identify that I had the condition until my heart was starting to fail… I don’t think the situation is right. Earlier treatment leads to a better prognosis… so a greater awareness of the condition will improve survival rates for future patients. To achieve this, the PHA UK run study days for doctors, attend medical conferences, and send information to GP surgeries. But to raise awareness of the condition amongst the general public, they need members to feature in the press. So early on, I realised I needed to put aside my fears and insecurities about sharing my private life… and help.
Last month was another great opportunity to raise awareness of Pulmonary Hypertension, as the results from a PHA members survey about ‘Living with PH‘ were released. Along with others, I was video recorded earlier in the year discussing how the disease affects me day-to-day. Press releases containing these interviews were sent out, to mark the release of the survey results… and wonderfully, five of us were featured in the press! What a successful week! My local newspaper did a lovely feature, and one day my local radio station repeated a section of my interview every hour in their news bulletin! Fabulous! I, however, was unaware of all this! Yep- it coincided with my digital detox! My story was in the news… whilst I was miles away, on holiday with Phil in deepest Worcestershire. My five minutes of fame, and I missed it! 😛
More was to come though! The following week, I had an unexpected call from BBC Radio Northampton… asking to interview me! Aagh! Cue internal mad panic! Cue a hysterical phone call to Phil wanting to cancel! A mere thirty minutes later, a radio car pulled up outside. There was no time to plan answers or practice what to say… but there was also no time to get more nervous. I was thankful that I’d had the strength to dress that morning -being interviewed in pjs would have been a little strange. Thankful it was only radio -I looked a state with my unwashed hair and swollen red face. And thankful it wasn’t live -we had to stop when Lottie excitedly jumped on the presenter, and when I was too breathless to talk! 🙂 In the end I was quite pleased. I didn’t say err or forget my train of thought too much. However it was tiring speaking continuously for so long, especially as I’m still below par and struggling with normal daily living. As soon as Martin left, I fell straight to sleep exhausted!
And amazingly, wonderfully, happily, BBC Radio Northampton made my story, and the topic of Pulmonary Hypertension, their main topic of the Saturday morning show. I was very proud! They repeated clips from my interview throughout the three hour show, and also interviewed Ian Armstrong (the Chair of the PHA). Hopefully a few more people in Northamptonshire now know what PH is. 🙂
But afterwards, when I replayed it again, I felt a lump in my stomach, at the thought of everyone listening to my story. Everyone knowing the truth about my life. I actually felt insecure and a little ashamed of me. Because being Sarah Marshall is a long way from the beautiful ideal. Through my blog, through newspaper articles, through radio interviews… I am actively telling people that. I’m sharing both the shiny happy side of being me… and the sad difficult side. It’s hard -real hard- doing that, when all I can see around me is perfection and ‘normality’, especially on social media. As I sat re-listening to my interview, I felt embarrassed that I was telling people how much my existence differs from theirs. I was outing myself as living an odd life, outing myself as not fitting the ideal, outing myself as not being a conventional success in the eyes of society.
But then I pulled myself out of that hole of insecurity. Nobody has a perfect life. Nobody. It is impossible for everything to go right all of the time. Instead life throws everyone curve balls, life gives everyone challenges, life can be hard and tricky for everyone. So even though many people hide these imperfect times from the outer world, instead sharing just the good with facebook… it doesn’t mean their life is only made up of those glittery parts on display. So I shouldn’t feel ashamed for sharing both the sparkly and black parts that make up my life. And I shouldn’t feel ashamed that I have both sparkly and black parts. ‘Cause we all do. My current black parts are just a little bit unusual! 😉
So yes, it is difficult sometimes to share the hard parts of my life… but I know that I, along with everyone else in the PH community, can’t stop. Not until all GPs have heard of Pulmonary Hypertension so it only takes a few weeks to get diagnosed. Not until A&E doctors and paramedics are no longer googling our disease when we rock up at hospital. Not until welfare advisers realise the condition can be as debilitating as other higher-profile illnesses. We need greater awareness of the disease. And being willing to share my life -warts and all- is one minute step towards achieving that. So I’ll be brave and keep doing it. 🙂