Physical distancing may be a new phrase and a new norm in current times, but for Michael (not his real name), it’s something he has had to live with for most of his life.
People would distance themselves from him because his skin was red, dry, cracked, and had blisters and bumps, and he couldn’t stop scratching himself.
They assumed he had a contagious disease.
What Michael has is atopic dermatitis (AD), also known as atopic eczema, a chronic and recurrent inflammatory skin disorder, characterised by symptoms such as skin dryness, itching, flaking and weeping.
“Although I have AD, I am treated as a Covid-19 patient,” says the 19-year-old student.
As a child, he used to have frequent skin breakouts, which got worse as he grew up.
Despite seeking medical advice and consuming both homeopathic products and modern medicine, nothing worked.
At 13, he was diagnosed with AD and his already troubled self-esteem took a further dip.
“I used to study in a private school. When my schoolmates saw my skin disorder, they treated me like an outcast.
“I was also overweight.
“I took my lunch and breaks alone. Occasionally, one or two persons might join me,” he shares.
“There were 15-20 people in my class and our tables were arranged in a U-shape or circle.
“When dead skin fell from my scalp to the table, my classmates would complain to the teacher, who would then move me to a separate table so that I was isolated from the circle,” says Michael, who is still scarred from the incident.
At times, the itch would get so bad that he’d get up around 3am and scratch himself.
He couldn’t sleep and would shift restlessly in bed.
He says, “My self-esteem hit rock bottom and I would be desperate for someone to just say ‘Hi’ to me.
“People even refused to shake my hands when there was an outbreak on my fingers and palms.
“When I hold the door for girls, some would go ‘eeww!’”
Michael retreated further into his shell, went into depression and became suicidal.
The teenager didn’t know where to seek help.
Feeling sorry for Michael, a schoolmate sat him down one day and told him to get his act together by losing weight and sorting out his skin issues so that he could gain friends.
“At first, I didn’t believe him. But in the end, it was his words that actually helped me.
“He was a popular kid in school and that encouraged me to change.
“I exercised and went on a diet. Within 10 months, my weight dropped from 100kg to 75kg.
“I was also recommended a dermatologist at Hospital Kuala Lumpur, and after seeing her, I have learnt to manage my AD.
“I have gained some confidence and am less depressed.
“I used to see the doctor once in two weeks, but I only need to consult her once in two months now,” he says.
Unable to work
Like Michael, freelancer Chong (not his real name), 43, has been suffering from AD since he was five, although he was only properly diagnosed five years ago.
Whenever the weather was hot and humid, red patches would appear on his shoulder and neck.
He recalls, “At that time, the doctors didn’t do a skin test. They just observed my skin and said it was eczema, and prescribed steroid creams to control it.
“I had to keep applying the cream because whenever I stopped, it would come back.
“Sometimes, I went for acupuncture sessions and took supplements.
“Most of my money was spent on these alternative treatments.”
At the height of his flare-up, which lasted for 10 years, he had to put up with small, raised bumps, which would leak fluid and pus.
Chong dislikes going out and uses the Internet to communicate with others.
When he was working in an accounting job and there was a deadline looming, his condition would worsen from the stress.
“No matter how I try to control myself, my emotions would be affected.
“The reaction would come out automatically on my skin and my boss would ask me to leave.
“When I was schooling, I could not concentrate on my studies.
“But back then, my condition wasn’t so bad. Only in the last few years, it has suddenly exploded,” he says dejectedly.
Eventually, he quit his job because he could not seem to “recover fully”.
Chong says, “Socially, I don’t want to go out and meet people as I’m still not ‘well’.
“I have to see the doctor quite often despite taking my medications, which helps control my condition by about 70%.
“On top of that, I take traditional Chinese medicine and supplements to strengthen the body.”
Michael and Chong are two of the many AD sufferers who cannot face the world and are gripped with mental health problems such as anxiety and worry.
Their stigma is such that they even refused to speak with this reporter directly via video or phone call, with their interviews having to be conducted via an intermediary.
Affected on multiple levels
According to the Mayo Clinic, AD most often begins before the age of five and may persist into adolescence and adulthood.
For some people, it flares up periodically, then clears up for a time, even for several years at a stretch.
The primary risk factor for AD is having a personal or family history of eczema, allergies, hay fever or asthma.
Healthy skin helps retain moisture and protects you from bacteria, irritants and allergens.
AD is related to a gene variation that affects the skin’s ability to provide this protection, thus allowing your skin to be affected by environmental factors, irritants and allergens.
Food allergies may play a role too.
In Malaysia, the frequency of AD has risen from 9.5% in 1994-1995 to 12.6% in 2002-2003, indicating an increase of 0.49% every year.
By 2022, the frequency of AD is expected to exceed 20%.
Michael was part of a recent roundtable discussion organised with individuals who are experiencing moderate-to-severe AD to gain further insight into the burden and challenges associated with this condition.
The roundtable is part of an ongoing quantitative and qualitative impact study jointly conducted by consultant dermatologist Dr Suganthi Thevarajah from Hospital Kuala Lumpur, consultant dermatologist and Dermatological Society of Malaysia president Dr Chan Lee Chin, and consultant dermatologist and Malaysia Eczema Support Community (MESC) advisor Dr Kartini Farah Abdul Rahim.
In their preliminary report, More Than Skin Deep: Atopic Dermatitis in Malaysia, which summarises the key findings from two group discussions conducted last year (2019), it was found that AD affects patients on many levels – physically, emotionally, socially and financially.
Says Dr Suganthi, “There are still a lot of people who are not aware of the misery and suffering of people with AD.
“People think it is just a skin disease and that the impact is only on the physical appearance.
“They don’t realise the actual impact it has on the patients’ quality of life.
“Some patients tend to take it lightly and just go to the pharmacy or traditional healer.
“But we have evidence-based medicines that work.”
Dr Kartini adds: “As a highly visible condition, patients may be embarrassed by their appearance and face misunderstanding from the public about the nature of the disease.
“Battling misconceptions such as these, combined with the burden of AD, can lead to low self-esteem, difficulty forming relationships, depression, and even suicidal tendencies.
“These are difficult to manage for adult patients, as well as parents who have to help their children manage AD.”
She gives examples of difficult situations like when the child with AD cries throughout the night, or when the father with AD loses his job and the family savings are exhausted.
“The emotional stress contributes to marital dysfunction too.
“School-going AD patients have difficulty focusing on their studies and their academic performance is affected,” she adds.
Reasons for non-compliance
The main problem with AD patients is that they don’t adhere to treatment as it requires a lot of effort and discipline.
Management of this condition requires patients to adjust their lifestyle to avoid triggers and to use the right moisturiser and medications regularly without fail.
Dr Kartini says, “This can be quite inconvenient and time-consuming.
“Counselling from their doctor to help them understand the importance of doing so can help improve compliance to treatment.
“It also helps to understand the reasons for poor adherence, which can vary widely.”
As mentioned in the report, these reasons include:
- Misdiagnosis or ineffective treatments, resulting in patients stopping treatment and not seeking further medical help.
- Inaccurate self-diagnosis based on what they read online or what their friends and relatives tell them.
- Fear of the prolonged use of steroid creams (known as steroid phobia), resulting in the patient seeking alternative treatments, which could be ineffective, or even harmful.
- Unable to afford seeing a specialist or the cost of specialised skincare and/or medication.
- Seeking a cure or an instant fix which doesn’t exist, and
- Doctor-hopping, which involves moving from one specialist to another.
Mental health woes
It’s not uncommon for AD patients to face many other challenges that could contribute to depression.
Dr Kartini says, “As a dermatologist, I can only advise them to seek counselling if they appear to be struggling in ways that dermatological therapies cannot help.
“Only a trained professional can determine whether it’s clinical depression or some other form of psychological condition.
“From a medical perspective, there is no shame in seeking professional help in coping with mental and emotional problems.
“The idea that seeing a psychologist or psychiatrist is embarrassing is a mindset that needs to be changed, as counselling or therapy can be very helpful in many situations.
“This is true of AD as well, as emotional and psychological stress can contribute to flare-ups.”
Parents of children with AD also face a great deal of emotional and psychological stress.
While the clinical features of AD are similar regardless of age, parents face the additional challenge of having to supervise their child’s care.
“The child may be too young to understand the importance of not scratching, may be crying incessantly from the discomfort, or is unable to sleep.
“Some young children may also be suffering extreme forms of AD or school-going children may suffer poor academic performance – these can all cause parents a great deal of worry.
“Parenting is difficult enough without AD to deal with, and counselling could be of help in some cases.
“In addition, a strong network of friends and family members, especially those whose children are also affected by AD, can help with providing emotional support,” she points out.
A strong support network is also important for children.
For this reason, parents or caregivers must be well-informed and educated about AD – what it is, why it flares up, how to prevent it from getting worse and the need for daily care.
Says Dr Kartini, “Over time, according to their age and ability to understand, they can teach their children to manage some aspects of daily care.
“Learning to manage AD is crucial, as parents will not be with their child 24/7, and if the AD persists into adulthood, they will need to do so independently.
“One of my patients has been struggling with AD for many years and has taken to social media to share her challenges and experiences.
“This has led to greater awareness among her friends about what it is like to live with AD, and they are more understanding of her circumstances and the need to avoid triggers when they are spending time together.”
So, the next time you see someone with signs of AD, don’t avoid them with the perception that they are “diseased”, but be kind to them.
They need all the support they can get.
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