“Don’t worry. It’s not contagious.” Famous first words I spent much of my young adult life uttering. As I teenager I remember people staring at the patches on my skin, while keeping a safe distance. As a young journalist I remember many newsmakers swapping roles, to ask me more about the condition. One of my most uncomfortable interviews was with a former Mayor of Durban, who flanked by his bodyguards, stared at my scalp the entire time, instead of making eye contact with me. As an adult, going for a massage, I remember the therapist taking a long pause until I would give them a mini explanation on psoriasis, with the assurance that it was safe for them to continue.
I was diagnosed with psoriasis when I was still in high school. I was 16 years old and living through a very stressful time in my home. Strangely enough, my mum contracted the condition the same year. I remember the days and nights spent in tears, asking God why I had to endure this. At the time my scalp was so bad, it was as if I had a tight rubber swimming cap on my head that refused to come off.
My parents took me to several dermatologists, who suggested coal tar and medicated shampoos – certainly not the stuff a teenager would be jumping up and down to use. One doctor injected my scalp with a steroid about 60 times. Trust me, it wasn’t as bad as it sounds. It felt like my scalp being stapled all over. What an amazing six months of bliss without psoriasis. When it started returning, with a vengeance, I went back for more injections. However, this time the effect only lasted a month – a sign that it was time to try something else. That’s exactly what has characterized much of my journey with psoriasis – a constant change in treatment. As one medication wears off, the next one must begin, and the cycle continues.
The access to medication for psoriasis patients in South Africa is largely determined by whether the patient is on medical aid or relies on the state to provide treatment. When I was younger, I used to be among the hundreds of patients queuing for treatment once a month at a government hospital. One could easily spend 8-10 hours there from arriving to collect your card, to the time you finally reach the pharmacy. I was mainly treated by young doctors serving their internship. Most of them were very eager to learn more about the condition and to help with the correct treatment.
Once I could afford a comprehensive medical aid, it made my treatment journey much more manageable as it meant I could go to private dermatologists to seek help. Of course, this also became a terribly expensive journey. Firstly, most specialists require you to pay upfront, and then claim from medical aid. There was almost always a portion that was not covered by the medical scheme. Also, some dermatologists would not let you leave without a long list of expensive products, conveniently available in their rooms, which they assured you would help if you purchased them. I quickly learnt over time to recognize those who were genuinely concerned about helping their patients, as opposed to those trying to build an empire on the insecurity of people.
Over the course of my journey with psoriasis, I’ve tried dozens of different treatments, from ointments, mixtures and creams, to herbs, oils, and vitamins. I’ve explored natural products and pharmaceutical products. I’ve researched extensively, yet still have questions that remain unanswered. Over the years I’ve spent many nights fighting back the tears brought upon by the pain of psoriasis, physically and emotionally. Winter is the most difficult time for me, when flare-ups are at their worst. The blazing hot summer days are also tough.
During the initial stages of psoriasis, my self-confidence took a knock. When the condition was at its worst, I avoided all social gatherings, unless absolutely necessary. When I did go, I would ensure that I was dressed in a way that would not draw attention to myself. As the years passed, I learned to manage the condition, and became more comfortable talking openly to people about it.
I found it interesting that during both my pregnancies, the psoriasis completely disappeared. I wondered if this would not provide some clue to scientists trying to work on a cure for the condition. Like millions of others, I long for the day that there would be treatment available without the serious risks that come with the current available medication. With psoriasis, often, it’s a case of choosing the lesser evil – live with the pain or use a drug that completely clears the psoriasis but may cause more serious health complications.
After being on methotrexate for a few years, I switched to a biologic three months ago. I still do blood tests every three to six months. While I’m grateful for the opportunity to be part of the trial in South Africa, I have been taking the injections with a great deal of apprehension. The drug comes with some serious warnings, including a higher risk of contracting tubercolosis and cancer. I counted 19 common side effects, and 93 less common side effects on one site alone.
My skin has completely cleared of psoriasis, and I feel amazing. However, the side effects have been intolerable on most days, prompting my doctor to change the treatment. I have been seeing a physician instead of a dermatologist over the past few years and feel like my condition is more holistically understood.
I’m often told to reduce my stress levels as this is directly linked to psoriasis. However, I have many roles and responsibilities which demand my time and attention – my roles a News Editor, Pastor’s wife, a mother to a 3-year-old daughter and a 6-year old son. I am also on an entrepreneurial journey with my Training company. Stress reduction is an ideal to which I strive but am yet to master.
My mum and I often talk about our phases of psoriasis and share remedies and advice. It’s become a regular part of our conversations. The same happens at church among those who relate to the condition. My children often pray out loud asking God to make mummy’s skin better.
I’ve come to accept that my skin doesn’t define me, and therefore shouldn’t confine me. On good days, and challenging ones, I do my best to inspire, uplift and engage others to walk in their God-given purpose. I am grateful to be alive and determined to make each day count!