World Mental Health Day
Last month I was guest editor for the Mind Charity, talking about mental health. This was to coincide with Organ Donation Week in September, this blog post is an adapted version of that newsletter. As a Kidney Transplant patient who also suffers with mental health and arthritis. I have been on quite a journey with my mental health, spanning decades. So, let me take you back to the beginning.
Man Up The Mental Health Stigma
My story began way back in 1977, flared trousers, Saturday Night Fever and Boney M, long before the music was used in Tik Tok videos. Back then man up was very much the norm, if you felt down, you were told to man up. This was passed down through generations and something I saw often as a child. I was surrounded by macho images, even pop songs called macho man. So, what I am saying is many of my generation would have grown up with this. So, it’s no surprise to me it has taken so long for us to open up more on our mental health.
Back in the 70’s, I was diagnosed with Henoch Scholein Purpora, a form of kidney disease, at 10 years old. After many hospital visits in my teenage years and missing a lot of school, I was told kidney problems would return in my late 20’s. This prediction turned out to be correct, if a little earlier as I was diagnosed with Chronic Kidney Failure at age of 26. In the lead up to that point, like many people, I just carried on working and popping aspirin for the headaches, until matters took a turn for the worse. I ended up in A&E in Kingston near to where I was working at the time.
I could barely see, as my vision was so blurred due to the high blood pressure. What I did not know is that my body was full of toxins, something normal working kidneys will remove during urination. My blood pressure was at a dangerous level, I was told that I would not have survived much longer, had I not come to hospital. Eventually the doctors told me I had chronic kidney disease on 14th December 1994.
Dialysis – Happy Birthday
In December I started Dialysis, the initial treatment for kidney failure, on my 27th Birthday a few days before Christmas. The nurses were amazing because it was a very emotional day for me, and they bought me an ice cream cake. It was such a lovely memory and I have fond memories of the nurses who looked after me back then. I eventually moved to Leytonstone and started treatment at the Royal London Hospital.
I struggled badly with Dialysis and have no good memories of it. It was a very low point for me and the first time I ever experienced what I now know as depression. Back then it was very much a kind of ‘man-up’, ‘you will be fine’, kind of mentality from my family, who sadly failed to understand how ill I was. Splitting from my girlfriend and just feeling awful about myself, I found it very difficult to accept my condition and my mental health suffered.
My Nan sadly passed away in the summer of 1995 and my depression got worse in the Autumn, and I was thinking of ending my life at the time because no one seemed to listen or understand. I never really understood much about how I was feeling, but in essence I kept asking a question many of us as patients ask, why me?
Then at a low point I got a call, this was November of ‘95. It was like I had awoken from a deep sleep, kind of lost at sea now finding a way back to shore. I had to have lots of blood taken for all the testing and went off to have Dialysis. I just sat and read books as I often did on Dialysis back then. Then a doctor came walking towards me, her name escapes me, but I can still see her face to this day, as I knew what she was about to tell me before even speaking. The doctor explained that someone else was a better match and the transplant won’t be going ahead.
Three weeks after my first call, something amazing happened. I received another call saying I was a match. I was so excited, a rollercoaster of emotions and this feeling of hope that everything was going to be ok. I was incredibly nervous and apprehensive, I also felt very alone that no one was with me, and no family was around, as I had fallen out with them. It was around 8am on 5th December 1995 and the porters came to take me to the theatre for my Kidney Transplant. This year In December, I will be celebrating 26 years of my Kidney Transplant.
On my journey over the decades, I realised it was ok to cry, it was ok to talk as well. Men and women opening up and talking about their mental health. What I have also learnt over the years, is the adversity we go through, very much becomes a strength. We use it to draw on in times of trouble. Covid and the pandemic has been a perfect example of that for me. As someone clinically extremely vulnerable, the strain on my mental health has been incredibly tough. But all that adversity I have been through, all that lived experience is now showing me the way.
Getting My Confidence Back
I have been lucky enough to keep working for many years since my kidney transplant. Going to college as I missed out on it because of not getting grades as I missed so much school. I also started a business making greeting cards with my voices inside, as well as self-employment. I no longer have the company and am no longer self-employed, but the transplant has allowed me to do the things I always wanted to do.
You still have an impairment as a transplant patient; however, you can enjoy life again away from the dialysis machine. Organ donation is the treatment for organ failure, it is not a cure. Therefore, this does have a knock on effect with work and wellbeing. There can be times when you cannot work, due to your condition, as well as mental health.
Looking back, it’s much clearer for me now to see how my mental started and that it is very much it’s own condition. I find myself dealing with it much the same way I did as a kidney patient. As I learn more about my condition, I understand the triggers that can happen with dates and memories. This also happens as a kidney patient for me in December. Remembering how awful I felt and all the emotions that come with that time.
For me, I am still very much on a journey of discovery. Not knowing what the future holds for me as a kidney patient, with my arthritis, or with my mental health. Moving forward, I will keep learning more about mental health, in the same way I did with my kidney transplant. Arthritis will quite literally be a pain, but I will also learn more about that condition.
Thank you for taking the time to read this post, and don’t be afraid to talk about your feelings. Being open and honest about how you feel, can really help you with your mental health. Kidney Club will be adding some changes this month, so feel free to join in and lets all help each other as patients. Keep well – Stuart