A Warrior’s Musings:  What are The Challenges of Living with Sickle Cell Anemia?

Whenever I meet someone for the first time and tell them I have Sickle Cell Anemia, one of the questions I get asked often is what challenges I face living with sickle cell. Sometimes, I answer what comes to mind. However, it has become a very regular question; the last time I was asked was a few weeks ago in an interview. It is easy to just repeat some of these visible challenges but leave out the sometimes, invisible and trivial ones. They are challenges all the same. I have been musing about this question a lot and felt it could be great to pen down in detail some if not all the challenges life throws at us as Sickle Cell Warriors.

Life is generally, very challenging. It however becomes more so when you have to trudge through life with not only these but added complications which may arise due to your health; especially if you live in a society which has a negative perception about the said condition you deal with. So, I hope this post with shed some light on the challenges of living with sickle cell.  Follow me then, let’s take this ride and make some discoveries.

The number one challenge warriors face is that of finances. The cost of staying alive for any warrior is huge irrespective of what economic power they and their family have. Bills, bills, bills and more bills are the order of the day, leaving deep constant holes in our pockets and those of our families.  It is difficult to save or plan projects for the future when the bulk of your hard earned money goes to paying bills to stay alive. Life is a luxury for us because the absence of these finances can well mean the difference between life and death or in having a minimum of quality life away from the hospitals.

Secondly, professional life is a difficult challenge faced by majority of sickle cell warriors. For one thing, it is difficult to find a job around people who refuse to give you the opportunity because of your health. Even when you get the job, it becomes more challenging if your boss and colleagues are not the understanding and empathetic kind. This has made many warriors hide their health situation from their bosses and colleagues, cry all night and wake up to go to work with pains for fear of dismissal and when the pains become unbearable leading to hospital stays, many come back from the hospital to find themselves jobless and back again on the job market and the circle continues.

These constant dribbling with the job market so to speak, can lead to lifelong psychological problems and loss of self-esteem… a challenge many warriors deal with leading to depression and stuff. This is because many who face this kind of challenge continue to feel they are not important or useful enough to their families and society as a whole.

In the social context, the challenges are many. Taboos and myths surrounding sickle cell does not help matters and unfortunately, unless you have a support system which sees beyond just the pains with living with sickle cell, the social challenges are daunting.  Society’s projection of sickle cell warriors as bewitched people out to ruin their families has given rise to a lot of stigmatization, discrimination etc. And these views have a far reaching effect on how relationships shape out for the warrior. For instance, parents telling their children not to befriend warriors because we can drop dead any time or parents refusing their kids from marrying warriors because they erroneously believe the 21 years myth that we don’t live above 21, has killed the relationship goals and dreams of many warriors. While some have met those who do not care much about the condition but the person, many have had to deal again and again with the hurt of broken hearts and promises, failed relationships and engagements, etc.  This has led to many warriors preferring to suffer in silence with some even feeling shame as if it was their decision to be born with sickle cell.

Furthermore, dealing with the medical professionals is a big challenge to many warriors, especially in Africa with limited health care facilities. While we applaud and appreciate the dedicated doctors and other health care personnel; who go out of their way to give us the best possible care and treatment, hospital battles and the fight for survival within its walls will continue to be a great challenge. Many do not know how to handle a warrior in crisis, misdiagnose cases as malaria or typhoid and thus administer treatments for such which doesn’t in any way, help with the crises.  Often times, some of these medical personnel feel they are being challenged by warriors and their families if a certain treatment is rejected. Worst, due to the fact that our pains are invisible and only the sufferer actually feel the depth of the pain, many continue to believe we fake the pains to access pain killers and other steroids to deal with an addiction problem. These believe has led to many warriors receiving poor or inadequate care while in severe crisis at the hospital which unfortunately, has sent many to an early grave.

Also, the elements are not very friendly towards us. While some look forward to dancing in the rains or playing in the snow for instance, we dare not do that or in the event that we damn the consequences and decide to have fun with the elements, we still need to take all the necessary precautions so we do not land in the hospital after having fun.

And lastly, our spirituality and faith or lack of is a constant challenge. I cannot count the number of times I have been asked questions implying a lack of faith or a relationship with God is what makes me sick. Most times, I ignore the insinuations but often times, it gets to me and I rant. I am only human. It is always difficult trying to explain to people over and over again that being sick has nothing to do with your faith or lack of. Unfortunately, it is always like blowing air especially if you are dealing with the kind of people who promote miraculous and faith healing as the ultimate solution to all our health problems.  Those who believe something must be lacking in your faith otherwise, how dare a servant of God falls sick and even suffer from a chronic condition. This is really a bane of contention and while I can’t say much about other warriors, I always find it annoying that someone who doesn’t know me will judge my faith or lack of on my health condition.

These are some of the challenges we have to deal with constantly in this journey we call life. While I may not have exhausted all of them as individuals have their own personal challenges they face, I would like to believe many warriors reading this would identify with most of the points listed above and so, I pray these shed some lights to anyone interested in learning about sickle cell and the daily challenges we face.

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ARREY- E. AGBOR-NDAKAW