Menstruation and Sickle cell: To the late bloomers

World Menstrual Hygiene Day 2022 was celebrated recently and the messages on the need for education, access to menstrual hygiene kits and an end to the stigma around menstruation that girls face and which keeps them away from school, were numerous.

Looking at all these messages, I however noted one message which is often missed. Menstrual health education or counselling for late bloomers, especially for  girls with rare diseases or special health conditions, especially girls living with Sickle Cell Disease ( I call them warrior girls).

In the entire list of sickle cell disease complications, there is one that is often under-looked but which is very important for persons living with Sickle Cell Disease (who prefer to be called  sickle cell warriors) be it the girls and the boys; it is education on understanding late bodily growth. For girls it may include but not limited to late menstruation arrival, late bust development, etc. The lack of education in this areas for warrior girls is often devastating .

Imagine an 18 year warrior girl who has not yet started having her period,  who is surrounded by school mates who have had theirs,  and who is booed or teased about it.

Imagine them growing up and thinking because of Sickle Cell, I am not going to have this experience and then years later it eventually happens and they are totally not prepared for it.

The beginning of a girl's period is usually a time of stress, anxiety, excitement for some. Now imagine how that time will be for a girl for whom having enough blood is already a cause of stress. For such a person losing blood that they do not have is worrisome.

I felt I should raise this because this is exactly what I and many women living with Sickle Cell who are my age, in Africa  and across the world, have gone through. In my case, menstruation was a nightmare, one that made me decide to block it out of my mind. Not because it was painful, but more because it was not there when it should and that caused me a lot of anxiety and hurt. Now the hurt was more from school mates and even some adults around me.

While my secondary school mates were already sharing tips on how to use a tampon or a pad. I had nothing to show. No blood , no breast and that meant stress. Stress from other kids who not knowing how their words hurt told me not to change in the same washrooms as them because they were not sure I was a girl. Stress from the jokes of older girls who may have meant well by saying they will be the first to buy me a tampon but whose  remarks always led to more talks  about my flat chested, skinny body which I hated. This torture went on from secondary to high school and to university. 

You can imagine the relief I felt when the period finally showed up halfway through university. But my joy was short lived. It came at a time when I had no female support. Zero mum, sisters all grown and gone and there was no internet like the case now that permits girls to easily get information.

 I still remember the lady who helped me during this period. She was in final year in the same university. She did not only safe me from lots of embarrassments and mishaps but also became a sister. Buying my first pad for me , teaching me about periods and how to act in class if it starts, about always having a pad in my school back well hidden in a side pocket, etc. But even with that I lacked the knowledge on how to manage my periods and my health. Each period was a nightmare then as I feared my body was losing all the 7 grams of blood I had been surviving on. This was a hard part and I learnt to manage this all alone as I grew up, got periods and got sickle cell crisis episodes. Even now I am still learning.

So I felt I should leave a word for the late bloomers, like me. And it is this

:-Do not worry, it (your period) will come and when it does, your experience will be unique, like the warrior you are.

-Do not fear about losing a bit of blood, the funny thing is, God in His greatness put what it takes for your body to adjust so you do not get ill when it does and if it does, get medical assistance.

.-Get counselling and tips from other lady warriors, no topic is a taboo in the Sickle Cell Disease (SCD) community.

.-Get medical advice on how best to manage your period and your health and especially managing your period in times of a sickle cell crisis.

-Get education on what menstrual hygiene tools are out there and which one best suit your kind of period and which your are comfortable with.

.-And finally, smile, you are beautiful even if that menstrual period is late in coming. Let no one tell you the contrary.

Overall, while I read and supported the messages I saw for world menstrual hygiene day 2022, I also hoped that in creating these message and in working on these issues, menstrual health champions will factor the needs of this group of young girls with rather unique menstrual development and by so doing ensure no girl is left behind when it comes to menstrual hygiene education, access to menstrual hygiene kits and support.

#sicklecellawareness

#menstrualhygiene4warriors