In the area where I live, there’s a shopping mall. Inside, there’s this big sign as one comes into the building saying, ‘Be considerate, some sicknesses are invisible’. The first time I saw it, I smiled because I could relate.
The reason medical professionals call sickle cell disease complex and challenging is because of complications that sneak up, affecting all parts of the body. These are haematology, growth and maturation, pain, infections, and psychological problems, among others.
A lot of these complications, except for Avascular necrosis and some patients manage to hide it, do not show outwardly. Due to the invisibility of SCD, sometimes, medical professionals do not believe their patients and tell them it’s all in their heads. This issue has caused a lot of disconnect between patients and medical staff. There are a few situations where one can tell that a person has sickle cell, for example, if they are really jaundiced or quite thin.
Sickle cell disease itself doesn’t show outwardly. When walking down the road, no one is going to see me and point at me saying, ‘Oh look, she hasn’t got a lot of blood in her system.’ Invisible conditions such as SCD are often overlooked generally. People tend to assume that if someone looks well, it means the person is okay health-wise.
Recently, I was on my way out and decided to take a lift at the station because the stairs were a lot. Someone looked at me and said, ‘You are too young to be taking the lift young lady.’ It’s difficult to respond to a stranger, who has made a massive generalisation and whom you know, you will never see again. Do I respond and be rude? Or do I let it go?
Another friend has told me how, when travelling, she had gone down the priority lane, only to be told by a staff member to go and join the queue because she didn’t look sick. Another friend told me how, again when travelling, she was told, “Oh you don’t look sick at all. Why would you be using this priority ticket?”
Like that beautiful signpost, some illnesses are invisible. In fact, unless you see someone with SCD having a crisis, you might not know the person lives with the condition. Why? Because they carry it well. Because people living with SCD are full of energy and hardly sit still when they have work to do.
I asked a friend of mine, Kemi Oguntimehin, who also lives with sickle cell, to tell me about her personal experiences.
She said, “A few weeks ago, I was drinking a lot of water inside a bus and a passenger on the bus decided to tell me, ‘Be careful with the amount of water you are drinking, so you don’t pee on yourself’.
“I remember a time when I used to go to a campus fellowship. I would go by bike because the building was up a hill. People told me that I was lazy and wasted my money on unnecessary things.
“I also recollect people making fun of me because I always wear a jacket or I would wrap myself up with a scarf, even when the weather is just slightly cold. I would regularly get comments like, ‘You are not normal; you are always cold, even in this weather, you are wearing a jacket’. I would sometimes reply that we are not all the same; that I am cold has nothing to do with being normal or not.
“A time of my life that I remember was when I had my baby. I was sick, in pain and extremely weak at the time. My mum helped me look after my baby. Meanwhile, my mother held a prayer programme for two to three hours twice a week in the house and my mother’s friends would come over. As far as they were concerned, I should be able to take care of the child myself during their programme. I understand that a blabbing baby is noisy and may be affecting their concentration during their programme. These older women would ask me if I was the first person to give birth.
“They also asked my mum that if I had given birth in London would she have followed me? And they would further ask why I couldn’t carry the baby when they were having their time with God. Their words made me feel inadequate as a new mother. Their judging words made me feel that I was not a good mother. I would not have had the extra help if I was well. During that time, I hated myself and I was depressed. I remember those times because I was in constant pain. I had crises every day for four months. I was dealing with extreme fatigue, and it took a lot of energy to stand up and do things during that period.”
A lot of people, who were in and out of hospital as youngsters, would remember those matrons or nurses, who spoke their minds. They would say something like, “Ah, you are back again. Didn’t you just get discharged last week?” Or worse still, when being discharged, they would say, “We don’t want to see you here again,” as if anyone with sickle cell wanted to be sick in the first place.
This also needs to be addressed in schools. Children who live with sickle cell should not be carrying a lot of books in their bags. Could the heavy books be kept in school? Carrying these books can trigger crises because of the weight of the books. This can affect their shoulders, legs or back.
So, next time you see someone looking well but doing something that you think is odd, please say nothing because you might think you are being helpful or complimentary or giving some unsolicited advice, when in actual fact, your words could be hurting the person. Don’t be quick to give advice to a stranger because there’s more to someone than you can see.
If you would like to get in touch with me about sickle cell, do so via email: [email protected] And do check out my blog: https://www.dailylivingwithsicklecell.com/ My book on Sickle Cell – HOW TO LIVE WITH SICKLE CELL and my other books are available for purchase on www.amazon.com
