“Mummy, please tell me why my twin sister Amorita is not crying all the time like I do and yet you say we are twins?”– That was a question from my daughter Ingrid Kamara, who has lived with Eczema since she was born.
Ingrid has battled Eczema since she was four weeks old. The skin on her neck, joints and legs would crack and ooze with fluids. The itchy bit was even more challenging for her because she could spend more time crying in pain.
While her twin sister Amorita spent a good time playing, running up and down, Ingrid spent more time looking for rough surfaces to anchor her body so she could scratch the itchy skin.
It broke my heart watching Ingrid scratch her body in pain. I would always tell her to pick up a tin of coconut oil and moisturize. I have tried to find the best remedies possible to ease the pain.
We tried the best skin clinic in the country but with no success.
Did you know that eczema causes scratching of the skin until it bleeds?
Yes! And the results? Red stained bedsheets, an exhausted baby and a fatigued and helpless mother who feels defeated for failure to find a remedy.
Did you also know that Eczema in childhood can progress into adulthood?
Yes, it does. Ingrid has been battling eczema since she was 4 weeks old.
Did you know that girls with eczema are often shrouded with stigma, rejection, frustration, bitterness, and feelings of isolation?
Yes, this is a fact. My daughter Ingrid has for the past 16 – years faced all these feelings. She has watched kids at school refuse to play with her because as they put it; “that girl has rotten skin, do not play with her,” they would say.
Ingrid would return home nursing rejection and feel out of place. As a mother, protecting, caring and answering the questions of your child with plain honesty was my job.
Then she would later write to her late uncle one day: “Thank you, uncle, for getting me the E45 lotion. It has transformed me from the ugly duckling as some students like to call me, into a princess and now everyone wants to play with me.”
But such moments of happiness were short-lived because another flare-up brought a new wave of agony in her life.
When she enrolled for a boarding school for her O level education, Ingrid was joining a new community of girls that did not understand her condition. So loose talk and mean statements started all over again.
“That girl has AIDS,” one of her classmates said.
“Me I don’t want to even sit near her,” another girl chipped in.
Girls shunned her and they would not want to be close to her.
The peak of the loose talk came recently when she prepared for her prom. Just a day to the prom one of her classmates turned up and spoke straight in her face:
“Ingrid if I were you, I would not even waste my time preparing for prom because no boy would pick you up with such a skin you have.”
She called me up feeling so deflated. And I advised her not to allow loose talk dip her esteem.
Days I have laid with her in bed are the most difficult moments. She can hardly find sleep because she is scratching all night long. The scratching has denied her the much-needed sleep she needs.
I tried the herbal remedies and to date, the healing is the slowest process I have ever faced.
Eventually, the doctor advised us to get her a long-sleeved white shirt for her uniform, so she could cover the skin patches on her skin and control the talk.
Meanwhile, each comment on her skin left a stinging impression on her and in most cases, people have looked at Ingrid’s skin condition in negative ways.
Ingrid has lived a life of eczema that most girls her age would not understand. Each day comes with so many questions from the people she meets both at school and the home community:
What is that dry, cracked patch on your skin?
Why are you the only student that wears a long-sleeved shirt?
Why is it that your twin sister does not have the same skin condition as you do?
Why does your skin look shrivelled?
Has your mum taken you to see the doctor?
Have you tried this remedy?
Ingrid has learnt to find short and straightforward answers as she continues to yearn to be accepted the way she is. But even as she scratches her body, she has learnt to control the pain and instead smile hiding that pain behind her infectious smile.
One day, she told me she needed to make the girls understand what she is going through and she needed the time and space to speak to them.
That’s a good idea! I said to her.
Ingrid at 13 entered one of the classrooms at her secondary school and gave a short lecture:
Ingrid: May I call your attention please, she said
Class: Murmuring as they wondered why she was demanding their attention.
Ingrid: I am in front of you today to give you a small lesson about my skin. I suffer from eczema. Does anyone of you know eczema?
The class was silent.
Ingrid: Ok Eczema, is a disease of the skin, she explained but most importantly had some wise words for the girls.
“I know many of you have been talking about me behind my back. Some of you have said really nasty comments about my skin. Today I chose to forgive you because I realize you didn’t know my condition. But I want to advise you that do not say nasty things about me today because you are girls and who knows one day you will have a baby just like my mother did and that baby will have eczema. So better ask me what would you do rather than gather your energies to talk nasty about eczema sufferers,”
Despite all the odds that Eczema has brought to her world, Ingrid has not given up on her studies. She loves to read, write and draw pictures.
On the day of the girl child this year, I pay tribute to my daughter Ingrid. I am the mother of the most resilient girl with eczema and our journey to find a remedy remains the longest trip of our lives. Here are some lessons I have learnt from escorting my daughter on her eczema journey
Girls with Eczema need support not mean comments
Girls with Eczema need statements that empower then to keep their esteem high.
Girls with Eczema need acceptance and not rejection from community members.
Girls with Eczema need love
Girls with Eczema need consolation and inspiration not to give up on life.
This message is for Ingrid: “The shadow of Eczema may have darkened your childhood and created a haze around your teenagehood, but this has not stopped you from shining and soaring to the top. Your infectious smile is a symbol of hope, resilience and persistence and guess what I am so proud of you and will always be with you on this journey. I am sure what you need now is total healing and I hope someone reading this will point us in some direction for healing.”
I look forward to when this journey will end and a fresh page of an eczema free lifestyle sets in.
I would be grateful to anyone who can give Ingrid some tips on how to live a more meaningful life while battling eczema.