What if you just don’t know? This is how living with sickle cell is

Following your dreams, relishing in your existence and making the most of everything is an integral part of building the courage to lead a significant life. When we are young, we are encouraged to take risks and seek comfort so that when we are old we shall have incredible stories to tell of how we lived a life of no regrets. 

One of the barriers to living life with sickle cell disease is not being able to do everything. As we grow up, sickle cell warriors are advised to avoid taking part in certain activities that might trigger a painful crisis. This leads to the individual taking caution if they choose to take part in strenuous physical exercises, sports, or even anything that might expose you to sudden cold or hot temperatures like swimming or hiking up a mountain. That considered, the list of risky behaviour can be long for a  girl growing up with sickle cell disease.  

 

A young girl with sickle cell disease

Children always want to feel included in everything that their friends are doing. As a young girl, I would sometimes feel like an alien as I did not know other children who had sickle cell disease. My friends did not have to miss school to attend doctor’s appointments or go missing because they had to spend some nights in the hospital. I frankly enjoyed time spent at the children’s ward, the food, kind nurses, fun playground and watching cartoons all day wasn’t too bad, however that was something my friends could not relate to. Growing up, my sister was the only one who understood my sickness and my classmates were mean to me. Some of their questions like why are my eyes yellow were hurtful but they did not know enough about sickle cell.

Lack of awareness about sickle cell is something what I dealt with from grown-ups as well, even in social setups such as church which is supposed to be a safe space. This led me to ask myself hard questions that were well past my time and my age such as if the Bible says that “we were all created in the image of God” then why was I born with sickle cell disease? As a girl, it would have been easier to affirm that I am beautiful, amazing and deserve all good things if we had all been taught about sickle cell from a young age.

It is more than enough having to deal with painful episodes and countless hospital trips than also having to deal with the stigma of being born with sickle cell. The positive talk and support from the women in my life, my mother, sister and godmother moulded me into the strong woman I have become.

A young lady with sickle cell disease

Worldwide, more than 275,000 infants are born with sickle cell disease each year. Sickle cell is a genetic disease made up of red blood cell disorders where the red blood cells are “sickle” or crescent-shaped. Normal, round red blood cells are flexible enough to move through blood vessels to carry oxygen through the body.  Sickle-shaped red blood cells are fewer and die quicker than normal red blood cells. Sickle cells stick to each other inside blood vessels, blocking blood flow and causing painful crises and problems in many different parts of the body, to the extent of organ damage. 

A young woman with sickle cell disease goes through puberty slightly differently than normal girls. I went through puberty two years later than my peers, which is common in female sickle cell warriors. It felt odd joining high school flat chested with just small tender breast buds. I remember my Mum packing training bras in my school box and promising me that my breasts will grow, I actually came to need them in my second year of high school. 

Getting my first period also came later. Luckily, I am not prone to getting painful cramps, however, I had to take care and ensure that I maintained my iron levels. One perk of me having sickle cell is that I have always had a super light flow that does not last for more than three days, but the feeling of tiredness is fairly higher during my period days. I had to learn what makes up a good diet for the woman’s body and incorporate it to ensure that I maintain my health.

There are some special female triggers in sickle cell disease that I only came to learn of as I grew into a young woman. Tight bra straps, waistbands, weaves, wigs, headscarves and even uncomfortable high heels can trigger a sickle cell crisis. For a sickle cell warrior, the trick is learning how to dress warmly while keeping it fashionable. 

A woman with sickle cell disease

Adulting comes with its challenges such as earning a living, building quality relationships and becoming an independent responsible adult. As women going into the world we are faced with several obstacles. Proving ourselves at the workplace is one of the fundamental ones. We always have to put our best foot forward in delivering excellent projects and rising through the ranks at work.

It is much harder on women with sickle cell disease as sometimes you can be on a winning streak, about to get the promotion you have been working so hard for then your health betrays you. Sickle cell is debilitating which makes one get used to the practice of holding on with all you got, as a result, when it comes to working hard to achieve your dreams sickle cell warriors often find that they have pushed themselves too far.

Generally, having sickle cell disease is looked at as a disadvantage by an employer, if we are lucky to get the job, the pressure is definitely on. Getting energy burn out is more common in sickle cell warriors, more so on women as we have a lot of responsibilities waiting for us at home after work. Stress and overworking is a trigger for falling into a sickle cell crisis therefore there is a need for sensitization of how a favourable work environment should be like for sickle cell warriors. It takes a whole lot of self-love learning how to take things at your own pace despite the pressure to keep up, thrive and exceed.  

When building friendships and dating as a female sickle cell warrior, one has to take care to not fall in the wrong company. Hanging out with friends who spend their time on unhealthy habits such as drinking, smoking and partying nights away takes away from our health in ways that we cannot afford.

The key is to take it all in good stride, a night out once in a while won’t hurt as long as it is done responsibly which means dress warmly, stay hydrated, listen to your body and don’t overdo anything. As women our friendships have to be supportive, building a tribe that understands your condition, who can come sit with you when you are unwell and laugh away the uncertainties of living with sickle cell. Quality over quantity is the rule of thumb. 

Dating is not a fairytale for women with sickle cell. Finding the right partner means having someone who is your pillar of strength when you are in pain. This is not an easy thing to ask from anybody which calls for exercising a high level of honesty and maturity while dating. Discussing your condition on the first few dates was something that I had to get comfortable with as the fear of rejection affects my identity as a sickle cell warrior.

A suitable partner for a woman with sickle cell needs to be patient and emotionally intelligent. One who won’t unknowingly resent you for having your condition or the possibility of passing it down to your children. They need to be understanding to avoid causing stressful situations in the relationship as well as aware of what you can and can’t do physically. 

As a woman with sickle cell, the best relationship you can build is with yourself. Developing wholesome practices such as positive self-talk, gratitude, meditation and feel good exercises such as yoga which teaches conscious breathing is necessary. When you can look at yourself in the mirror and smile at who you have become there’s nothing you cannot overcome.  All in all, centring yourself through self-love heals all.