I’m about to kickstart a project that’s aimed at helping those of us who suffer from hidden pain. I want to give us a voice and a safe space to explore the impact of our illnesses on our lives through portraits, interviews and videos.
Because I’ve finally realised how bad it is for me, my family and my friends. I’ve been suffering in silence for many years, and it’s come to the point where I need to make something positive out of a pretty awful situation.
Bit of background
Some people who know me will know that I injured my shoulder a few years ago, but only a few will know just how bad it is. It happened with a seemingly innocuous incident where I dropped a box of books on my shoulder whilst clearing the attic ready for a loft conversion (thanks to my wife who studied for a masters in English Lit, we have a house full of books!). I shrugged it off initially with a beer, even though the pain and shock were pretty bad! For the last six years now I’ve been suffering a lot more than I’ve made out to people - pretending to be ok because I didn’t want to appear weak – carrying on as normal.
And at first this was fine, I was still able to do my normal activities, including one of my passions, martial arts. But about halfway through a lesson I realised I’d really damaged myself. I stopped training, which was devastating to me and I did try to push through with my normal life, but it became more and more clear that I couldn’t.
I’ve had many GP appointments over the years and they’ve sent me for many tests, but frankly it wasn’t a particularly supportive or understanding time. They gave me drug after drug – aimed at masking the pain and supposedly allowing me to mange my life and they sent me to the same specialist who did the same tests, on the same part of my body again and again (it was, as it turned out, not the right part of my body, but more of that later). Nothing really gave a clear diagnosis, so I was pumped full of more drugs. Some of them helped, others were awful and actually caused me to break down completely (drugs that I learned could cause psychosis).
Christmas 2019 was the worst time – I ended up in A&E with such severe pain that I couldn’t cope, and a new symptom appeared – constant spasming in my face and jaw making my head feel like it was going to explode. I was given morphine and even more pain killers, but they caused the spasms to get worse.
I was trying to work through all of this and maintain friendships and a family life (not always successfully I’m sad to say). I started looking into my injury for myself and was extremely fortunate to be (finally) prescribed medical marijuana. I have to pay for it privately, but it is completely legal and completely wonderful. It doesn’t kill the pain completely at all and I still have to take a cocktail of other medications, but it stops the spasms, clears my mind and even allows me to sleep a little better. It’s also allowed me to reduce the number of opioids and other prescription medicines I’m taking. It costs a lot of money though and because of both the illness and the current pandemic, work isn’t always easy to get, so there’s a huge strain on me and my family.
After six years, I’ve finally been given a diagnosis and a course of action – an operation and a strict regime of physio. Sadly this was all put on hold back in March due to the pandemic, but just knowing that I’ll eventually be helped gives me hope for the future.
This project isn’t just about me, it’s about others who are suffering in silence with their pain.
I’d like to hear and share your story. My story is about being ignored, misdiagnosed, prescribed addictive opioids, and about losing myself. Your story might be the same, or very different. I want you to be able to tell your own story, what caused your pain, how long you’ve suffered – your good times, and your bad.
I’d also like to take a portrait of you that will show where you’re feeling the pain (so in my case I’ve shadowed out my left side because this is where the pain affects me).
You can contact me HERE if you’d like to take part in the project, find out more about me, or about taking part. Or if you’re a member of the press and are interested in featuring my journey, please do get in touch.
Times are tough and I’m setting up a funding page to help give a voice to those with hidden pain. Please do click the donate button if you feel that you can spare anything at all. All proceeds will go towards the costs of the project.
It’s time for a change in how we as a nation deal with pain.
Please feel free to contact me if you have any questions or would like to be part of the project.
Please the title of your email it A Shadow of myself.
Every little will help either get to the shoot or space to photograph and interview in. Every little bit will help towards the cost of the shoot or space to photograph and interview in