In the last three weeks, as I was serialising Dr Hendricks’ life story, I thought of many other warriors I know who do what they do out of sheer willpower. We read that Dr Hendricks worked tirelessly and was determined to achieve success as a doctor and she did. But my goodness, at a high cost! The pain of ulcer for 30 years is no joke and still she was working as a doctor. Actually, it wasn’t pain, but the agony of leg ulcer; having to stand on her feet that were bandaged up. This has led me down the route of thinking about how some people are open to let people know they live with SCD and some people want to keep their health issues to themselves. I am talking about those whom sickle cell disease affects.
A lot of people living with sickle cell disease do not want others to know that they are living with this life-long disease. What is it about sickle cell that will make one keep quiet about it? After all, to be ill is normal and illnesses come in various grades. Cold, headache and fever are also illnesses. There are several reasons why people want to keep living with an illness secret.
The fear of being teased or harassed by colleagues is a factor that cannot be ignored in the workplace. There is the possibility of one’s career progress being stalled if one exposes that one lives with a long-term illness, like sickle cell.
Living with a chronic illness affects so many areas of one’s life negatively. A lot of people do not talk about living with sickle cell and part of the reason is because it may make them look weak. Another reason could be that one wants to fit in with others. There is also the worry of people not wanting to have a relationship with one.
Some tend to hide their illness under the mask of wellness. Pretending that they can go out in the cold, go skiing in a -20 degrees weather; or go running every morning with others when the weather is cold outside. The truth of the matter is if one mentions living with a disease, people may look at one and think maybe one is lying or one is being self-centred.
What those who are living with a long-term illness do is to show others that they can do well by being the best person in the class, or they can be the best in their chosen fields in spite of living with sickle cell. This could be on the level of, ‘I can also be as competitive as my competitors and I will show them I can achieve it’.
Another reason is societal judgments. This can be from peers, colleagues, schoolmates, bullies and even family members. We seem to forget that illness is normal and part of life. The fact is sometimes society does not want to confront illness. This is perhaps the reason why someone who lives with a long-term illness will pretend and not want to talk about it to family members, because of their judgments.
Not wanting people to know can in turn make it difficult for the person to go to the hospital and seek medical support when required. This can also lead to diagnosis being delayed or not wanting to find out that one has this illness. This can lead to lies about their symptoms or looks.
The unfortunate thing about sickle cell is that as a person grows older, there could be physical manifestations that become visible. For example, one could have Avascular Necrosis. No person is immune to this complication as they grow older with sickle cell. According to the Sickle Cell Society, as one grows older, other complications of sickle cell manifest, such as permanent damage to at least one organ, vision loss, bone health, (as stated above), pain, and other chronic complications.
There is no doubt that there is a stigma attached to living with a long-term illness and it can be challenging living with a long-term disease. Sickle cell, for example, is hidden, by that I mean, it is not a disease that is visible, unlike if someone had a sore all over their lips.
The issue of stigma is real. Many people living with sickle cell have lived through all sorts of prejudice because of this disease. This has involved all kinds of misrepresentations in different areas of one’s life. For example, looking at one’s lifestyle and judging, it could be held against one professionally, or socially; one could be denied a job. Lastly, could this also affect one’s romantic relationship? These are tough questions that the person living with sickle cell will come across.
Sometimes, it could be that one does not want to burden those close to one. There is no doubt that knowing will create anxiety in the hearts of others. Whatever reasons we may have for not letting others know are valid, but is it the best way to go about things?
Are we truly protecting those close to us or is it because we are ashamed that we are living with a disability? Hiding sickle cell can also be a sort of coping mechanism for dealing with crises. Sometimes, one will do things that can be outrageous in order to mask the pain that one is going through.
Is keeping sickle cell a secret such a bad thing? Can one not argue that it is actually no one’s business and one should only share with whom one wants to share with? It is easy to not speak about it because sickle cell is unseen. And yet, can we be doing ourselves disfavour by keeping quiet?
If you would like to get in touch with me about sickle cell, do so via email: [email protected]. Check out my blog: https://www.dailylivingwithsicklecell.com/. My book on Sickle Cell – How to Live with Sickle Cell – and other books are available for purchase on www.amazon.com.
