My Bed Wetting (Enuresis) Experience
Its been ages…… I am so sorry been busy with life generally and helping the sickle cell community thrive….. I am back for good.
Enuresis is defined as urinating when you do not intend to go. Enuresis is often called bed-wetting when it occurs at night. Enuresis is a common problem for children and teens with sickle cell disease. It happens because they are unable to concentrate their urine well, and they are encouraged to drink a lot of fluids to prevent pain crises. Bed-wetting is a symptom of sickle cell disease; it cannot be helped. Punishment will not correct this condition.
MY ENURESIS STORY
My name is Audrey Mukoro. I am a 34 year old sickle cell warrior and a single mum.
Basically, my life with sickle cell has not been easy.
Being a sickle cell warrior has had an effect on my self-esteem right from my childhood.
I was bed wetting as a child, it was not much of a problem because almost everybody did bed wet as a child except that mine didn’t stop in time and it kept on till my teenage years.
Apparently, the delay was caused by the sickle cell but I was totally oblivious of that fact all along. I was embarrassed many times by my parents and in their words, “why can’t you be like your mates, (reference to my neighbors and childhood friends you’re still bed wetting at your age.
All their statements were negative and both parents wouldn’t stop shooting verbal bullets aimed directly at my self-esteem. I was hit by those verbal bullets because indeed my self-esteem was badly shattered by those piercing words and I had to carry the sounds up until my adulthood.
I remember my parents referring to me as a ‘witch or someone who is possessed’ and swims on the urine, so I could catch a cold; come down with crisis to drain him of his resources. I was still bed wetting and my parents did try to stop me but all methods proved abortive and they went from calm approach to making so much noise about the bed wetting; that even our neighbors were now aware of it.
It made me feel like an abnormal child because our neighbors’ kids of my age did not bed wet as often as I did, it came to a point that each time I did bed wet I was made to go out to fetch water from the well and wash the sheets then; all of these put together had psychological effect on me which I am living with.
At some point, I believed those words and began to accept that indeed I won’t amount to anything and nothing good will come out of this particular Nazareth.
My personality was deeply scarred by those words because like music on repeat, those words kept playing in my head and won’t stop. I hear hurtful and heart-breaking words all the time.
Growing up in that kind of family and environment had a huge dent on my self-esteem.
It was not easy to come out as a sickle cell warrior or to accept who I am. It took me 3 decades plus to finally come out in the open, from that time till now, it’s been a journey and a movement to help other warriors find their voice and come out fully and live productive lives despite the challenges of living with the disorder.
Through (ASCF), Audrey Sickle Cell Foundation. We do outreaches, awareness campaigns on and offline, we also have a WhatsApp support group and give help, support and advocate for warriors and also educate people who are not warriors but want to learn about sickle cell disorder. ASCF has an information bank firstname.lastname@example.org.
In the university as an undergraduate, I was having a conversation with my father and he said “look at your older brother who is healthy, perfect and okay that we are expecting to be everything is having issues and you that is half is the one that has been able to achieve all of these…”
I do not know if he deliberately referred to me as ‘half’ but what I know is that I felt that very statement in my heart. This happened over fifteen years ago and I still remember everything.
My enuresis resolved itself, as I grew older; i still cannot recall how it stopped but I knew that in my year one in university days I never bed wetted at anytime till date. So to parents whose warrior kids bet wet do not punish or bully them it will resolve as they grow older, bullying them will embarrass them more and have an effect on their esteem.
Rather encourage them to drink less at night and more during the day as water is of the essence to us.
SNIPPETS OF DISCRIMINATION
In the society, getting a job, making friends and getting into a relationship has been a challenge and an entirely different ballgame.
Even when I am qualified for the job, you hear them say “oh sorry, we can’t give you this job because…. ” they give flimsy excuses.
I get the same remark from other people when I am trying to get into a relationship, they tell the other person “don’t get close to this person…”
Even when it is evident that I am doing well, they still make such remarks because I have sickle cell. The ones that come close tend to take me for a ride, take advantage of me because to them, I am a warrior and I cannot do anything.
Sickle cell is not a death sentence. Sickle cell warriors are not weaklings.
Yes, our body system works in a different way from yours but it does not in any way make us lazy or deserve any form of discrimination.
We didn’t bring this upon ourselves. It is not a self-inflicted disease, it is something we were born with, we didn’t choose to be born this way.
The least anybody should do for and to us is to empathize with us rather than discriminate or blame us.
To parents of sickle cell warriors, learn to support your child and encourage them. Speak to them using positive words only because the words you speak can either build or break their self-esteem and personality.
Life is designed for the strong. It used to be survival of the fittest, but the clime has changed, it’s now the elimination of the unfit or weak.
Fret not, there’s good news, everyone, yes, you reading this, you are strong and unique in your own beautiful way.
See you soon!