Chronic illness and mental health
I was really sad to learn of Rachael Bland‘s death, she died only three days ago from cancer, at the age of 40. I was also upset to find out about a lovely young lady – Claire Wineland who died in this last week too. She died from complications after a double lung transplant. She was born with Cystic Fibrosis, an inherited genetic illness that causes a build up of mucus in the body that ends up affecting the lungs, pancreas and liver (mainly).
It got me thinking about the link between mental health and chronic illness. I live with Cystic Fibrosis (CF). My mother had CF too and lived to the age of 50. My uncle, Andrew, had CF as well and lived to the age of 23. It’s a progressive disease which means that it worsens as you age. I am 47 years old now, well past the average life expectancy age for someone with CF.
My Doctor’s have suggested that I may have “genetic modifiers” that have kept me fairly well instead of succumbing early to this insiduous illness that has ‘taken’ many others before me. I was well until I reached the age of 25. In 1996, I ended up with a rare blood disorder called Thrombotic Thrombocytopenic Purpura (TTP). The cause was unknown but it nearly killed me. It’s a rare (I don’t do conventional) blood disorder that affects the platelets. The average person has around 400 platelets and mine were down to the last 20. A blood transfusion caused me to have some type of epileptic fit and after that I was placed into an induced coma. All the lying down led to pneumonia and then my kidneys failed. Kidney dialysis followed to help restore kidney function but the prognosis was grim as I had what the docs called – multiple organ failure.
I had also had a tracheotomy on had a respirator/ventilator to help me breathe. I lost all my hair and a lot of weight to boot. I looked a sorry sight. Somehow I pulled through. For most of the time, I was in a coma but the recovery process was gruelling. Mental resilience certainly helps when you are forced to deal with an ailing body.
Unfortunately, mental health often gets overlooked when dealing with chronic illness. Yet, I feel I have survived many health traumas due to my mental attitude. I had a giant cell tumour removed when I was 17 years old – from my left leg. Thankfully, it was benign. I had surgery in March 2018 to remove part of my colon due to bowel cancer…and I am still here.
Despite my mother and I both living with CF, she never made a huge deal of it. We both soldiered on, went for our regular hospital visits, took our handful of tablets daily and carried on with our lives. I wasn’t wrapped in cottonwool and I was expected to get on with it. Perhaps there could’ve been a bit more love and affection but on the other hand, I have rarely felt sorry for myself.
Like everyone else, I have “poor me” days and feel like life is so unfair but I quickly snap out of it because it is ultimately unhelpful. I am also not saying that it is healthy to suppress anger or feelings of unfairness or injustice. Feeling pressure to be positive all the time can be just as damaging.
My tips for coping with chronic illness:
Take it one day at a time – don’t think too much about the bigger picture as this can feel overwhelming. Instead ‘chunk’ it down into more manageable steps. What need to be prioritised and focused on now?
Don’t catastrophise. It’s easy to assume the worst but it won’t help you one iota. Keep an open mind about your prognosis. Each person is indivual.
Acknowledge the fear – it’s a normal part of the process but don’t allow it to cripple you. I say to myself something like: “I can see I am feeling super stressed/scared about that, but it’s not helpful for me to dwell on something I have no control over”. Then I distract myself with something else – work, Netflix, a nap etc.
Separate what you can control from what you can’t control. Get stuck in with the bits you can control. Research helps me but it can also frighten the pants off me too – be careful of Google and don’t believe everything you read!
Acceptance around what you can’t control will go a long way towards easing mental suffering. It can take a while though as there is a theory, accoridng to Elizabeth Kubler Ross and David Kessler that we generally go through five stages of grief:
Humour can lighten a dark experience. It’s an easy, cost free way to lighten the mental load we have to carry. Illness and death are topics that are avoided and this can make it harder to manage. Mental health can suffer as a result. I can laugh at myself and my unconventional body and it helps me to cope and remain mentally resilient.
Talk about it, get it out. It helps to share experiences with others. That’s one of the main reasons that I started this blog. We can often feel alone when dealing with chronic illness but when we share and are less afraid to talk about these threatening topics, they lose their power and the fear reduces.
No one has guarantees in life. Learn to accept that life is fragile. Knowing this can lead you to experience a more fulfilling life where you appreciate the small things, take time out and re-prioritise what is truly important. That can’t be a bad thing.