“For what seems unbearable, that’s where we will find a miracle.”
Tengku Chanela is no stranger to the industry. The Pahang royal, who used to reside in Kuala Lumpur, helmed two businesses under her wings before embarking on her adventure in the United States.
With her profound love for holistic wellness practices, she now founded a sound healing space called Jiwa and HALAL HEMP. She was also recently appointed Director of Strategic Initiatives for Verde Resources (regenerative agriculture and carbon capture solutions) in 2022.
On Instagram and TikTok, she boasts a strong following and is known for her candidness. Her content centres around wellness, the changing landscape of medicine, and her journey towards healing. However, in April 2023, she recently shared updates on her ongoing battle with Topical Steroid Withdrawal (TSW).
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If you’re unfamiliar with TSW, here’s what you need to know.
Individuals with eczema often use topical steroids or over-the-counter steroid creams to manage or alleviate their symptoms and flare-ups.
According to NationalEczema.org, “topical steroid withdrawal” refers to a constellation of symptoms that may emerge in the days and weeks after a person stops using topical corticosteroids.
In her ongoing healing journey, she shares updates and insights about her skin condition on Instagram. Taken from her recent posts, she goes candid and warns about the potential risks of using topical steroids and hopes to spread awareness to help others avoid similar experiences.
To raise awareness, we interviewed Tengku Chanela about her experience dealing with TSW, the warning signs to watch for, and her optimistic perspective on the situation.
Tengku Chanela Jamidah breaks down her journey to healing with Harper’s Bazaar Malaysia:
Hi Tengku Jamidah, how are you doing?
“I’ve just turned 40 over the past weekend. I feel like this era will be a defining moment in my journey, transitioning from my former indulgent self to a fully non-toxic lifestyle with a major focus on my overall health. Although I am in agony from itching, insomnia, stinging and more, which causes so much discomfort. I know why it’s happening to me. So the sense of clarity can be comforting and affirming despite my physical challenges. I feel resilient and empowered.”
Since moving to the United States, what steps have you taken to manage your skin condition?
“When I lived in Las Vegas, I barely used steroids. This was for a period of 2 years +. Due to lifestyle factors, I lived with my mum and siblings. Our home was peaceful and joyful. My kids were happy and well-fed since my mum is an amazing cook. I took a break from work and focused on my healing by meditating, doing sound healing, and attending yoga and gym classes daily. My skin was glowing despite being in intense heat and cold. There is a gut-skin connection, and stress triggers eczema. I was stress-free; hence I was also practically eczema free.”
How long have you been living with eczema?
“Since I was a baby. During my childhood, it affected my mental health, I did not want to wear gym shorts or take swim classes because I didn’t want others to see the bleeding and scars, especially on the back of my knees. When I reached my 20s, I was already on strong topical steroids. In my 30s, I started oral immunosuppressants. I thought I had it “under control”, but it was clearly a temporary bandaid to address the symptoms.”
Since being diagnosed with TSW in December, what measures have you taken to ensure it doesn’t interfere with your daily life?
“Let me be honest; TSW robs you of your life. There’s no other way to describe it. It is one of the most debilitating conditions out there. Let me explain why.
Early on, I experienced the “volcano” stage. You turn red in all the places you applied steroids and more. The “red sleeve” is when your arms become inflamed like a burn victim, like in the TSW documentary – Skin on Fire. I also experienced thermal dysregulation and would shiver for no reason, probably attributed to the nerves and suppressed adrenal glands.
My eyes were swollen. I did not sleep until sunrise; even then, I would get a couple of hours of sleep daily. I feared eating and losing weight because I was afraid I would have an allergic reaction. You would find me in bed, crying and figuring out what to do with myself. I consulted with several doctors, went on oral steroids and topical immunosuppressants and was even gaslit by them because TSW is not something dermatology boards recognise. You question your sanity.
I could not work, leave the house, or care for my children. Even today, I experience milder symptoms, and I’m slowly gaining back my life. The only way is to take it day by day. What’s most important is to have a partner and family member take over all the responsibilities, and luckily enough, I have that support.”
Could you share your journey to healing with us?
“I made many mistakes because there is no proper guidance. I would spend days reading forums, studies and social media posts, searching for answers. However, I came across ITSAN (International Topical Steroid Awareness Network), a global non-profit dedicated to TSW, and they have been my primary resource as they provide a global directory of practitioners that recognise TSW.
I currently consult with a naturopath on the ITSAN directory that has me on a treatment protocol to detox my liver and gut. I now take about 12 different supplements daily. Combined with acupuncture, red light therapy, grounding and being on a low histamine diet, I choose to tackle TSW naturally.
Not all cases are successful; therefore, the best option is to opt for natural healing methods and eliminate irritants and allergens. The only pharmaceuticals I consume are antihistamines; even then, I am slowly tapering off. Sadly, 80% of TSW patients experience suicidal ideations. Hence, I am very committed to my self-care and mindfulness practices that include journaling, sleeping with binaural beats on, meditating and sound healing.”
What solutions have been most effective in helping you manage this healing process?
“Vlogging is a great one! I started posting on TikTok and received a lot of support from the community. We couldn’t do this without each other, from finding the suitable zinc cream to using a plastic brush to scratch instead of your nails.
Some fascinating individuals have come to offer guidance. A lady named M is even building my Amazon lists for me, from which blue light blocker glasses (to regulate my circadian rhythms) to the specific red light device to use at home.
I even discovered a treatment centre in Singapore that greatly accelerates TSW healing through CAP/laser treatment. He put me on a moisturiser withdrawal protocol.
We have to start sharing our experiences more because you never know whose life you can help with that little bit of information. Exchanging information and lifting others up is humanity’s greatest exercise, and knowing others have your back when you are going through hell is validating. Thank god for social media and the internet.”
You seem to have a positive outlook on this experience. How did you arrive at this mindset?
“The answer is love. Love for myself and my family. I started having compassion for myself. With compassion came curiosity, with curiosity came solutions, and with solutions came blessings. I looked at the various healing modalities and sat down to address all aspects of my life – my relationships, upbringing, my conditioning.
I have been on a constant quest for self-discovery, and that’s where I gather my strength. Not all my posts are positive, there are some on the verge of a breakdown, but every day I ask myself.
How can I step into a high vibration? How can I choose to look at this brief moment of my life with acceptance and kindness? How do I want to show up for myself and my children? I have suffered enough. The mind is powerful, happiness is a state of mind, and every day I choose to go there and not to a dark place.”
To raise awareness about TSW, what were the initial symptoms you noticed?
“The steroids were no longer working. My eczema would return even after the application of 2 weeks (usually the duration suggested). The patches turned red, and my eyes became swollen as if I had a severe allergy attack. I started becoming highly sensitive to my environment. I could no longer smell fragrances and started getting headaches riding Ubers with air fresheners. Even the slightest whiff of my brother’s lip balm would have me running as fast as I could in the other direction.
My skin continued to be dry and inflamed. I could no longer wear wool or synthetic materials. It would make me hot and itchy. I started experiencing hot flashes, which I now realise was thermal dysregulation.”
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For those currently experiencing TSW, what advice would you offer?
“First, you’ve got to get your mindset right. This is a long battle. Some people experience symptoms for years, so be mentally prepared.
Second, get professional help. You need a practitioner to guide you, whether it’s a TCM doctor or a dermatologist that recognises TSW. My advice is not to do this without guidance. You will go insane and spend unnecessary time and money that could be devoted to healing.
Third, prepare your income and finances. Some choose to go on disability, which is not an option for everyone, but you won’t be able to work. You may find yourself in bed or the bath for hours on end. If you have savings or a partner and family you can depend on financially, you are lucky. If you have no option but to work, look for remote jobs with flexible hours or build a passive income stream.
Fourth, lean on the community. Whether it’s by joining the ITSAN Facebook group or speaking to other TSW patients, their support and understanding are vital because this condition is brutal, and you want to talk to people who can relate.
Lastly, treat the root cause. Fix your gut, diet, and lifestyle. Be prepared to eliminate all toxic chemicals, irritants and allergens from your life. Go ahead and find natural products and stop using skincare for vanity’s sake. It’s best to learn to accept and love your genuine self.”
Is there an inspirational quote that sits close to you to get you through anything when times are rough?
“Yesterday, while I was walking in the park, I came across a memorial event. A lovely lady was singing and strumming a guitar for her deceased friend, who I assume was sick and had recently passed. They may have been songwriters, as her lyrics resonated with me profoundly.
Looking directly at me, she sang, “For what seems unbearable, that’s where we will find a miracle.”
I take it as a sign the universe is ready to bring me something incredible after this hard journey. I am ready and eagerly awaiting to receive it.”