As we know, sickle cell anaemia is a long-term genetic disorder. Sickle cell is an inherited disease caused by a defect in a gene. A person is born with sickle cell disease only if two genes are inherited, one from the mother and one from the father. Sickle cell disease affects red blood cells. People living with sickle cell produce unusually shaped red blood cells that can cause problems because they do not live as long as healthy blood cells and can block blood vessels. Normal red blood cells can live up to 120 days, but sickle cell live up to 10 to 20 days.

Another situation might occur when the sickle cells are destroyed by the spleen because of their shape and stiffness. This is important to know because the spleen helps to filter the blood of infections. Sickled cells if stuck in this filter die. The result is with less healthy red blood cells flowing in the body system, one can be chronically anaemic. The sickled cells also damage the spleen, and this puts one at greater risk of infections. Sickle cell can be managed with medication, and this means that the patient will have less crises. Sickle cell can also be managed with bone marrow transplant and gene therapy. A sickness that is long-term is also known as a chronic condition.

Living with a long-term illness affects many areas of one’s life, including relationships, employment, finances, and one’s mental health. Living with a chronic illness can also be debilitating, both physically and mentally. The toll it takes on one’s body is bound to affect one’s ability to cope with psychological and emotional stress. Chronic illness can make it impossible to do the things that one enjoys and when you see people around you, doing it, because they are in good health, it hurts deep down that one does not have that same kind of freedom. And if one is not careful, living with a chronic disease can also rob one of a sense of hope for the future.

As someone with sickle cell, it is difficult to make long-term plans because I sometimes think, would I be alive? For a long time, in my twenties and thirties, I always thought I would be dead before I was 50, but God has been faithful. When one is sick all the time, it can lead to a myriad of intense and long-lasting feelings. For example, sadness, frustration, social isolation, low self-esteem, stigma, discrimination, exhaustion, fear, and guilt.

I tend to only let a core group of people know because I don’t want everyone around me, worrying all the time. It is possible that my friends might also not want to share things with me because they don’t want to bother me. As a patient, in hospital all the time, one may feel tired, frustrated, worried, or stressed, especially when dealing with pain, tests, treatment, and flare-ups. These can lead to significantly poorer health outcomes and reduced quality of life. Research has shown that one in three people living with long-term illnesses suffer from depression or anxiety and have severe symptoms. These can lead to significantly poorer health outcomes and reduced quality of life.

Some of the factors that influence symptoms of depression include the physical pain of the illness, the grieving process of losses associated with the illness, the fear of the future, and a sense of hopelessness that this is a death sentence when it is not. Yes, one knows that living with a chronic illness can be draining both physically and mentally, not just on the patient but also on family and friends alike. Chronic diseases such as sickle cell is a full-time job. From the moment I wake up, till I lay my head on the pillow, I am constantly thinking of how what I am doing or wearing could result in my having a crisis. For example, it could be, have I drunk enough water yet? Am I warm enough? Have I eaten fruits? What about my daily tablets, have I taken them? What did they say the weather would be like today? I am feeling some pain in my joints, should I go to that party? I am feeling some pain, should I take some tablets with me? I was stressed at work today; would it result in a crisis when I go to bed? I am not feeling fine, should I cancel that presentation? No, I can’t because my team is depending on me. What can I do? And the list goes on. It takes a lot of effort and willingness to make the changes necessary and one feels overwhelmed.
Being sick from a young age, one has no understanding of what sickle cell is. But one can see that parents and family members fret over one. Being young, one enjoys the attention, until one gets to school and the bullying starts and still one doesn’t understand that one is different from other kids, even though everyone is the same except for gender. And when you finally get it, your brain finds it hard to process the fact that you will not be able to do what other people do and you will have to make some difficult choices in life. One option with the realisation is to be in denial and do many things that you are not supposed to do.

An example is going out late with no adequate means of transportation back home, exposing yourself to the elements because you want to wear a new outfit that you know exposes parts of your body. You feel emotionally devastated at all the hurdles you must overcome. People go out and wear what they want but with anyone with sickle cell, a lot of consideration would have been given to what to wear. How can one not end up with some form of anxiety or depression living like this?

One essential thing to do is to make sure that one is surrounded by people. Do not self-isolate as your mind will fill you with lies about what you cannot achieve; says who? You can do what you want to do and achieve what you want to become because the only person who can hold you down is yourself and not sickle cell.