Disclaimer: The experiences and opinions described in this article solely reflect those of the writer and are not intended to be taken as medical advice. Please seek out the assistance of a medical professional if you have any concerns about the topics discussed below.
On a beautiful sunny winter day in November 2017, we arrived in Qatar from the UK, ready to start our new life as a family. My eldest daughter, Keshavi, had just turned three years old. From birth, she oozed vibrance and exuberant energy. Her outgoing, bubbly spirit shone throughout her early years. She was also an adventurous child who thrived when challenged.
We arrived with her grandparents and enjoyed numerous family visits during the first year. This helped all of us settle, particularly Keshavi, as she was always a family-oriented child.
A New Routine
Keshavi attended nursery in the UK, so we also enrolled her in one here after a couple of months of settling into our new home. We noticed a sudden change in her behaviour after the first month. She became more aggressive and irritable, and it was evident she wasn’t her usual self. This was the first moment we learnt of her empathic nature: we believed that she was absorbing everything in her environment and struggling to process its negative aspects.
When Keshavi started school a few months later, we saw her happy personality bloom again.
The First Rash
During the summer of 2019, Keshavi began to develop a mild rash on various parts of her body. We trialled emollient creams and installed a water filter in our shower, and her skin improved after that.
Unfortunately, over the next few months, the rashes became larger, red, and sore in the folds of her knees and elbows. We managed her symptoms with mild corticosteroid creams following the advice of her dermatologist, who confirmed a diagnosis of Atopic Eczema.
Bath times and mornings became a struggle as her skin stung when it touched water, and her sleep quality was poor every night due to continuous scratching. Her condition fluctuated from month to month, with the flare-ups worsening and increasing in length every time. She would cry and scream in agony.
It reached a desperate point where antihistamines and topical corticosteroids were no longer effective. So, Keshavi’s dermatologist put her on Dr Arons’ eczema regime on two occasions. This regimen involves gradually weaning patients off potent immunosuppressive and steroid treatments according to an individualised schedule. Unfortunately, this only managed her condition in the short term, and her condition worsened as the treatment neared its last stages.
A Holistic Approach
After exhausting medical options, we looked to commencing alternative therapies, including homoeopathy and essential oils, alongside conventional medicine to manage the root of her eczema.
We consulted an allergy specialist, and after a few tests, it emerged that Keshavi had severe allergies to dust, dust mites, dairy, and some fruits. I also applied the knowledge I had gained from some nutrition courses to reduce and eliminate some foods and introduce others that could support her healing. Unfortunately, this caused her to struggle in some social situations, including friends’ birthday parties, where she couldn’t eat the foods her peers enjoyed. As a result, her self-esteem was impacted when it came to forming close friendships.
The Effect of Lockdowns
Keshavi’s condition worsened during the latter months of the pandemic. The new normal involving masks, online schooling, and staying at home affected her in many ways. Keshavi missed her family in the UK, whom she hadn’t seen for years. Additionally, when face-to-face schooling and extra-curricular activities recommenced, Keshavi became extremely distressed and developed a phobia towards social situations. Wearing a mask irritated her skin and impacted her ability to breathe, especially as she breathed through her mouth due to her congested nose and adenoids. Her anxiety also became so severe that she would continuously be upset and in fear, anticipating her next school day or activity. I needed to be with her providing 24-hour emotional and physical support, which was extremely tough for us as a family. There were many moments when I broke down due to exhaustion and feeling helpless.
At this point, we paused Keshavi’s activities and sought support from the school to help her manage her anxiety in the classroom. She enjoyed spending time with the support advisor, whom the children referred to as the “feelings lady”, and along with her class teacher and school nurse, we collaboratively supported Keshavi the best we could.
The Lowest Point
Keshavi experienced such severe psychological distress in the summer of 2021 that it triggered her worst eczema episode. This led her to endure stressful blood tests and hospital visits every week. Her skin, particularly her face, became wet, bleeding, and raw. She also had infected open wounds that required hourly dressings and topical management. Following an emergency hospital visit, she required oral steroids, antibiotics, and potent topical treatments to manage her flare-up. However, I was impressed by Keshavi’s strength and bravery at this point. She soldiered through, taking each day as it came, never complaining.
How Keshavi Manages Her Eczema Today
Maintaining a routine with eczema is extremely important, so Keshavi moisturises her skin at least twice a day and takes oat baths. She is mindful of what she eats and chooses the foods that support her health, avoiding those that act as irritants and are inflammatory for her. She also keeps her nails short and hands clean and has good quality sleep-wearing gloves to prevent scratching. I monitor her closely for early signs, pre-empt severe flares, and act accordingly.
Experiencing stares and comments is a standard though difficult aspect of living with a skin condition. Now, at eight years old, social interactions and friendships are more important, so she struggles with confidence sometimes as she feels she is not “normal”. Here’s her experience in her own words:
“I get bullied every day I go to school, but I always have friends who stick up for me. I really hate eczema because I have to put cream on twice a day. My mum had the experience of eczema as well. My eczema has gone on for eight years and just comes and goes every month. It sticks to my clothes a lot, but I am very strong. And guess what? I am not allowed to eat or drink any dairy or processed foods. My teacher is always kind to me, though.”
My Own Eczema Experience
As a child, I also suffered from severe eczema and asthma. This led to multiple hospital admissions due to infections, missed school days, and a traumatic childhood of bullying. At the time, there was limited experience and knowledge of how to treat the root cause of eczema. My multiple wounds would also stick to my clothes, constricting my ability to walk, and showers were an ordeal due to the pain I experienced when water touched my skin. Coping with the remarks and stares was something I just had to endure. My mother had no support or experience, and as much as it was difficult for me, I believe it was tough for her.
With all that said, I am fortunate to have had this experience because it helps me help my daughter in the best way I can possibly imagine. I often share my experience to empower her to strive and do her best.
Daily Tools for Empowerment
The mental health of your child is so important with any condition. So, I believe it is vital for Keshavi not to hold emotions and allow them to consume her, as this tends to manifest into an eczema flare. We make sure to have one-to-one time daily, where I invite her to open up and speak about her emotions. She also keeps a journal, and I encourage her to sit alone and write about her experiences and how they made her feel. We even speak about the things she can derive from her personal experiences to help others. I also encourage her to face anything she finds challenging so that she feels empowered and able to do anything she sets her mind to.
As strange as it may sound, I often invite her to embrace and talk to her sore eczema patches and tell her skin that she will help it to get better. This gives her a sense of acceptance and manifests positivity, which, from my experience, accelerates her healing. These are just some of the strategies I use to keep Keshavi’s mental and emotional health in check.
My Chronic Illness Parenting Tips
- Communication is so vital. Spend at least 30 minutes per day with your child and allow them to share their feelings. Don’t forget to also share how you feel, the good and the bad. It helps them if they see that you are a human who makes mistakes sometimes and feels all types of emotions. Let them know every day that they are not alone.
- Their condition is a part of them, so teach them to accept and embrace it, so it doesn’t become something that limits what they can achieve.
- Build a community for your family that gives your child a sense of belonging.
- Celebrate your child’s triumphs: After three years, Keshavi recently plucked up the courage to dip her body into seawater, despite the pain she experienced. She was absolutely thrilled, and we celebrated her achievement with a little gift!
- As a parent, you must fill yourself with energy and love to give everything you can to your child. So, taking time to practise self-care is so important, even if it is just for five minutes per day. You can do this by drinking herbal tea in the garden, walking barefoot in the sand, having a skincare ritual, or reading a positive book.