My Chronic Illness Journey
My M.E. journey began eleven years ago, at the age of 13. Although I had experienced chronic illness from a very young age prior to M.E., due to suffering with Juvenile Arthritis from the age of 6, I couldn’t have been prepared for the unbelievably tough times that were ahead.
The M.E. hit me very severely instantaneously and has unfortunately continued to deteriorate over the years. It started with various infections and the flu, which led on to me becoming increasingly ill. Despite blatantly being in a great deal of pain and being extremely unwell, when they discovered that the arthritis had gone due to the medication and treatment I had been receiving for the previous few years, I was hit with doubt and confusion by the medical world and even family. This continued over the years, with everyone except my mum thinking it was all psychosomatic; it was so incredibly disheartening to think that despite me being so ill, everyone still thought that it was some fictional thing in my mind. This disbelief unfortunately continued for the next nearly four years, until I was coming up to the age of 17; then, whilst I was in hospital, an M.E. specialist travelled down to me to give me a diagnosis of severe M.E. It was in one sense of course a huge relief to finally receive that diagnosis of an illness that I had already come to the conclusion I had, but at the same time, hearing the fact that there is indeed no treatment or cure for M.E. truly hit me like a ton of bricks.
At that point, I was nearly 17 years of age and had been in hospital for a very long time; my depression and anxiety spiralled out of control, causing me to self destruct. I was in hospital for a year, before having to be put into a psychiatric unit for a year due to simply not wanting to live anymore, as I found everything way too much to deal with. It’s enough having to cope with a chronic physical illness like M.E., but to have to deal with mental health issues on top of that all became much more than I could cope with.
After a year in that particular unit, I was then moved into a nursing home up near Bristol, which was even further away from my mum, making it a very lonely place for me to be in. I stayed there for nearly two years, until we finally found a place down in Exeter that was wheelchair accessible and suitable for my needs. It certainly was such a relief to finally be back with my family and out of the system of being stuck in hospitals and units.
Family is of course such an important thing for any of us, but when you’re spending the majority of the time stuck in bed, having the people you’re closest to in life around you makes such an incredible difference to life in general, especially mood wise.
Most people underestimate how truly debilitating M.E. can be, especially if you’re hit with it severely. The awful chronic pain, fatigue, weakness, migraines, brain fog are all a daily occurrence for me and something that can be very difficult to manage at times. Instead of this being portrayed, the majority of people outside the M.E. community think the condition simply makes you feel very tired and that’s it, so at times it can be hard to convey how complex this illness is, when there really isn’t an awful lot of understanding out there for it.
The severity of my M.E. means I’m predominantly bed bound, and then for that other small percentage of the time, I’m hoisted into my electric wheelchair. Despite living with this debilitating illness for the past eleven years, I really try not to let that stop me from pursuing my greatest passions in life. Although there have certainly been many times in the past where I’ve had to cling on to them to not let myself sink any lower with my mental health and depression.
I’m extremely passionate about photography and writing: they are both very close to my heart and I truly seize the opportunities when I’m well enough to pursue them both. I write for different blogs online, one of which is a music blog that I very much enjoy contributing to, as I’m hugely interested in music; it’s another creative outlet that has kept me going through some of the toughest times in my life. There isn’t a day that goes past where I don’t listen to music, whether that be via Spotify online or vinyl (I’m an avid record collector too).
Of course my photography can be much more difficult to push forward with in my situation, but when I’m feeling well enough to be hoisted into my wheelchair, I always take a camera out with me and I simply love photographing anything in the local area. I’m very thankful for having outlets such as my photography and writing, as in the darkest of times, I can try to give myself something positive to focus on, no matter how hopeless things may seem. I truly urge you all to find a passion of yours to pursue, in whatever small way you’re able to; it really makes such a difference for day-to-day life and serves as a great distraction from the constant pain.
I actually began working on a photo story a few years ago, as I wanted to depict the true reality of chronic illness and the light and shade that my life brings. I’m very eager to raise as much awareness as I can of this terribly misunderstood illness, to portray it all in its truest and realest sense, to enable people to have a clearer understanding of how complex and debilitating M.E. is.
Due to the fact that I’m unable to get out and see the outside world very much, a Facebook friend set up a group page called Lil’ Hannah, where different people have Lego figures in wheelchairs, looking like me, and have photos of their figure in various different places, making for some fantastic photos. There are now people as far away as Australia with Lil’ Hannah figures, who take them out and photograph their part of the world. It was such a great idea, as when I’m not able to get out, still seeing different parts of the world through the group page is brilliant.
If any of you are interested, you can check out my website at hannahobrienphotography.org.
I’ll be continuing on with the chronic illness photo story, as well as hopefully building up my photography when I’m well enough to.
And I wanted to say a big thank you to Louise for asking me to write this for M.E. Support, I look forward to connecting with more of the M.E. community and working on spreading awareness together for this horrid condition so many of us struggle with.