If you speak to anyone with sickle cell anaemia, you will find out that their emotions are all over the place. Emotions are an important part of every individual. But emotions can be complicated and also confusing for people living with sickle cell. What I believe is essential for someone living with sickle cell is the ability to talk about their emotions and feelings. Anyone living with sickle cell will alternate between these different feelings, which are anger, fear, and sadness. If they’re able to process the emotions the right way, they will get to a place of acceptance. All these different feelings have sub-categories.
Anyone who feels sad may also experience feelings of loneliness, disappointment, heartbreak, grief, unhappiness, loss, depression and misery. All these negative feelings will definitely affect someone who lives with sickle cell. As we know sickle cell is a disease that is unpredictable and can start at any time. It is no respecter of time, season, or place. If someone is preparing for a major event or project and sickle cell rears its head, there is no way that one would not feel any of the emotions I mentioned earlier.
Anyone who is afraid may easily feel worried, nervous, anxious, terrified, desperate, confused, and stressed. Fear may creep in if one needs to have surgery and the reason would be over the thought of the surgery being unsuccessful. I have had a few operations over the years and living with sickle cell has added that extra pressure or fear to having the surgery done. This is because sometimes before surgery, one has to have what is called blood exchange, a process where the blood is taken out and ‘good’ blood is injected or the person is given a blood transfusion. Those times, I thought, ‘Here I am and I haven’t even had the surgery yet and I’m already going through some procedure that is a big deal,’ and that will make me stressed, terrified, or anxious.
Anyone who feels anger may equally feel annoyed, frustrated, bitter, infuriated, irritated, mad and cheated. These feelings may come from a sudden crisis. One hopes to control the pain by taking mild painkillers but within minutes, it could escalate to the point where the patient is thinking, ‘Lord, this pain is too much. I can’t cope with it and I would rather die.’ In situations like that, there is absolutely no way that one may not feel bitter, irritated, frustrated, or cheated. Sometimes, those living with sickle cell live with pain all through their lives. Can you then understand why they may be mad and take it out on those who are closest to them?
What one needs to ask oneself if living with sickle cell is, do you want to go through life having all these negative emotions eating you up on the inside, where you snap at the slightest provocation, where you’re impatient, irritable and intolerant of people thereby pushing people away from you or do you want to leave a better life?
Ways to help yourself would be you trying to know your body; know your sickle cell triggers, and try to safeguard yourself as much as you can. This is of course easier said than done.
Another way is to manage your stress level and by that, I mean if a crisis starts. Instead of getting upset and thinking why me, do what you need to do in terms of the painkillers you need to take or go to a hospital; the earlier you get medical help, the better for you. Find a way to deal with your stress in a healthy way.
Another way of helping yourself is to talk to yourself constructively. Do not be hard on yourself. Positive thinking is a powerful tool. Instead of looking negatively at yourself and thinking that you’re powerless, useless or you’re incapable of doing anything, remind yourself of the last time you had such a bad crisis and how you overcame. The fact that you are alive means you’ve been fighting a good fight and as you know, that is why sickle cell patients are called warriors.
Another way of helping yourself is to try to become active and engaged. The Internet has many courses that you can do or training that you can take part in. Isolating yourself will definitely not help and instead will have a negative effect on your emotions, where you think you’re the only one suffering and going through this disturbance. Try to engage yourself with other people. There are a lot of sickle cell support groups around; become a member, become involved so that you can equally hear about how other people are surviving. If you’ve got any spare time, volunteer your time to work with such charities or the support groups.
And lastly, find support for yourself if you’re in a place where emotionally you’re not coping. Going through the emotional pain of living with sickle cell daily can really be disruptive, both physically and emotionally. Charities and sickle cell support groups would be a good place where you can talk to someone or look for counsellors that you can talk to.