Sickle Cell Anaemia and mental health.
Sickle Cell anaemia is a disease that distorts the red blood cells into a crescent shape that restricts oxygen flow through the blood. The treatment for a Sickle Cell crisis is harsh and involves heavy pain medication mainly opioids, antibiotics if there is an infection and being cannulated for a drip of fluids. Coming off these opioids is difficult especially if you’ve had a high dosage to calm the pain but because it also helps you forget how bad you’re feeling which is a relief, but you must come off them because they are a dangerous drug if not controlled.
Sickle Cell and mental health hasn’t really been dealt with much but as a person who suffers from anxiety and depression with sickle cell, I think it should be dealt with more. When you feel like your body, the ultimate machine is attacking itself it can feel traumatising. Add that to the psychological aspects and it’s very easy to go off the deep end and never come back. I am still learning how to keep my demons at bay as well as keeping my body healthy even though I have an erratic disease that is out of my control.
As it is mental health awareness week here in the United Kingdom, it is this last point that I really want to focus on. Poor mental health can both be a trigger and a side effect for a sickle cell crisis. A sickler’s best chance of a pain free life depends on firstly great medical care (which the NHS provide) but also great self care. So that means drinking and eating the right foods and movement, which can be done through gentle exercise. It sounds simple enough and most sicklers are mostly fine because they stick to this, I try my best to but it can sometimes be difficult.
I have an anxious brain, that triggers irrational thoughts all the time. The smallest task can trigger a mild panic attack. Sometimes it comes off like I’m afraid of the world. Being in a crowd of people sets off my anxiety because I feel like the world is watching me, I know they are not but an irrational side of me doesn’t believe what’s in front of me. The earliest memory of me feeling like this is in my younger years around 7/8 when my mum would leave to go to the shops I would have a deep fear that she wouldn’t come back because something horrible had happened to her. That anxiety would trigger a crisis. Anxiety is a strong trigger for me from the mildest attack like talking to somebody new or to having a full blown panic attack before a big exam or assignment, in fact I would be too shell shocked after the results were released that I would not check the feedback given for fear of not being good enough thus triggering another attack. This got so bad that I’m my final year of undergraduate I was in hospital 3 times over the last few months. I got so anxious I forgot how to look after myself properly and masked everything with pain killers.
But the other side effect of being a sickler after a crisis is the depression that you feel when you are meant to recovering. After the disease knocks you off for a week minimum, you feel lost. You have to put your regular life on hold and the thoughts of why me plague the mind. When you’re in unbearable pain, dark thoughts tend to enter your mind and once you start thinking like that it’s hard to recover. Being in that dark space is very lonely everyone is very lovely and helpful helping towards your recovery but it doesn’t stop the pain you are feeling. Once these dark clouds take hold you feel helpless and all you want to do is stay in bed, staying in bed exhasibates the pain and slows healing. Your body becomes weak and achy that moving becomes a harrowing task, movement that’s meant to be your saviour is an enemy. So you lay down and don’t allow yourself to be and progress with your life.
Luckily for me I have a great consultant, specialist nurse and pyschologist that I see during clinic every four months or are just a phone call away. The Derbyshire NHS trust provides a great service that helps me recover but I also have to meet them half way by working on myself. Suffering with mental health issues with a chronic illness and without support can easily destroy a person and that’s why all I ever feel is gratitude when I’m feeling low. I think about all the help I have and I am grateful I am not alone in this world trapped inside my very loud brain.