It’s tough to know where to start with this, as chronic illness is such a difficult subject matter to approach, but here’s my story…
My first stint in hospital began at the age of 4, when I had to have an operation on my foot and afterwards had my foot in plaster for quite a number of months, but that was something that became manageable for me and thankfully didn’t cause me too much pain at that young age.
This was followed by the real starting effects of illness at the age of 6, when I first started to develop a condition called morphea, which I have down my right leg and it effects the fat and muscle, which shows up as a form of bruising down my leg, I’ve had biopsies taken from it to determine the treatment. Then, at the same age I began to feel the symptoms of Juvenile Arthritis. But, as soon as I hit the age of 6, things became serious rather quickly. Despite the fact of being in an awful lot of pain in all of my joints and not being able to attend school due to that, the simply horrid doctors I was under at the time, put it all down to me attention seeking, which I must say was a very hard thing to hear at the age of 6, when all you want is your pain to go away and everyone is of the mindset that I was just another kid trying to find a way out of attending school. It wasn’t until 4 years later, when I went in with my hands completely claw like and all of my joints swelling up like balloons that the penny finally dropped and they diagnosed me with Juvenile Idiopathic Arthritis. I instantly felt a huge sense of relief to finally have a diagnosis and treatment for my ill health. Things to a certain extent, became manageable for a few years; with weekly injections, daily medication and frequent hospital visits, my Arthritis was under control. And I truly tried my up-most to not let it effect every aspect of my life, I was able to attend school again and loved the aspect of learning, especially the more creative side of school.
Then at the age of 13, I fell very ill, at first we all thought it was my Arthritis worsening in some way. But it was in fact the onset of my severe M.E (Myalgic Encephalomyelitis). I unfortunately had to endure the same extreme doubt from doctors and even close family members that there was actually anything wrong with me at all. Yet again facing that same challenge for years and to this day, M.E is still one of the most misunderstood illnesses out there, it’s so unfortunate how common it is for the sufferer to go through this battle of getting recognition to the fact that we are genuinely ill. It truly is a sad reality of this complex illness.
I was properly diagnosed from an M.E specialist at the age of 16 and despite that, it’s still been rather an uphill struggle in every way it possibly could be. I’ve been in and out of hospitals, a nursing home and also a psychiatric unit; with not only suffering from my physical illness, I’ve had extreme depression from a young age and then in the past few years, also being diagnosed with BPD (Borderline Personality Disorder). Due to my mental health struggles I had to be admitted into the unit and was there for a year.
For a teenager to be stuck in the system of hospitals and units for many years it all became too much for me and the struggle simply continued until I came to my breaking point, leading to regular self harm and several attempts on my own life. I’ve genuinely never been this open and honest in written form about my struggles, as there’s such an awful stigma attached to mental health illnesses still to this day, despite it being 2018! But I think it’s truly important for me to now share my story as open and honestly as I possibly can to raise awareness for such misunderstood chronic illnesses such as M.E, especially being on the more severe side of the spectrum. And of course for mental health problems, as these are both things none of us are talking about anywhere near enough as we should be, as it’s such an incredibly difficult and at times rather distressing subject to approach, especially when it comes to subjects in the personality disorder realm, self-harm and attempting to take ones life.
I’m now 24, next month will be 11 years since the onset of my M.E. I’m for the majority of the time bed bound and then when I’m feeling relatively okay, I’m able to get out in my electric wheelchair for trips out. Actually last Monday was the first time I had been well enough to get out of the house for nearly 10 months, so that was a huge deal for me. And all being well, fingers crossed, I’ll be able to go out for another short outing at the weekend.
With everything I’ve suffered and gone through, I’ve managed to cling on for dear life to my creativity and passions, with them being photography, music and writing. It can be extremely difficult to continue creative pursuits whilst being bed bound the majority of the time, nonetheless, whenever I can make it out of the house, I seize that opportunity as a time to work and focus on my photography. I’m currently starting two different photography projects, both shot on film, that I’m very excited about and that simply give me something positive to focus on during the day.
In the past, I’ve been working on a photo story series, portraying the realities of chronic illness and the light and shade of my life. I have that as a whole section on my website, for those of you who may want to check that out.
Without holding onto that creative streek and holding those passions very close to my heart, life would certainly be a very difficult thing to get through, as we all need an outlet in life, an escape if you will, simply something that we can get lost in and photography certainly does that for me. Plus, I also love to write, I find it’s something that can keep me occupied despite being stuck in bed. I write for a great music site called One On One Music and very much enjoy writing album and song reviews and curating various playlists too, which is always fun. I’m also hugely passionate about music and enjoy a rather eclectic mix of music and records. This tends to come hand in hand with my photography, as in the past I’ve thoroughly enjoyed photographing concerts, but unfortunately I have had to miss out on a number of different gigs due to my ill health, which can get incredibly frustrating after a while. It’s been four years since I’ve last been to a live show and it’s something I’ve truly missed. But, I’m very much hoping in the coming months I can restart my venture into music photography when I’m feeling up to it that is. I’m also very much working on delving into portraiture, especially on film. And also landscape and architectural photography.
As, severe M.E is a very difficult illness to have and to be able to plan events with, or say to meet up with a friend, go for a coffee etc. With my severity of M.E I have debilitating flare ups that have unfortunately become more and more frequent as of late. So I must say it becomes a very isolating, lonely illness to have, when the main people you see are doctors and psychologists, it certainly gets rather lonely. I guess that can be a part of illness that people tend to forget about, how incredibly isolating have long term conditions is. I’ve lost a lot of friends over the years, due to the fact that they simply couldn’t understand my illness and my problems were too much for them, which is pretty laughable considering what I have to go through on a daily basis.
It’s certainly difficult for people to know what to do to help me though, I have some good friends who ask what they can do to help me and that’s a very tough thing to answer, dealing with both mental and physical illnesses I have very low days and in that case I guess, it’s just support that I need or someone to watch movies with and eat good vegan food together, it’s definitely been a while since I’ve been able to enjoy that time with a friend. But I’m fortunate enough to have a Mum as a best friend, who has the been the one person throughout all of the chaos and pain over the last 20 years of my illnesses and struggles, who has been there no matter what and believed me when nobody else would and for that I’m eternally grateful for and am truly blessed to live with someone so extraordinarily wonderful at not only being my Mum and best friend, but also being my full time carer whilst dealing with her own chronic struggles.
Through this piece about my story, I hope that I can somehow convey the struggles and suffering that physical and mental health illnesses unfortunately bring and have brought to my life. And also if possible to raise awareness for them at the same time. As, with speaking up about these issues as a community of people who battle throughout each and every day, we can smash that awful stigma that still surrounds such misunderstood topics and really show the true realities of living with these types of conditions.
Please head to Hannah’s website to see some of her work – she will be adding new work soon!