World Psoriasis Day 2016 : Support from a spouse

Earlier today, my wife and I attended the World Psoriasis Day 2016 at Hospital Sultan Ismail, Johor Bahru. The event was organised by the Psoriasis Association of Johor (PAJ) with the support of hospitals and sponsors.

It is an annual event but the last one we attended was in 2012, which I blogged about here -> An ailment without a cure. We missed the past few years because of my wife's poor health condition. She was hospitalised a few times last year and the year before. This year, she seems to responding well to a new medication regime and is healthy enough to attend. In fact, this time around, the programme included a new addition, a talk by a psoriasis patient to share her experience of the disease plus another talk by a family member of a psoriasis patient on the support given to the sufferer.

My wife and I were approached by Dr Choon Siew Eng (Head of the Dermatological Department at Hospital Sultanah Aminah) to become the speakers and we gladly agreed.

We were each given about 10 minutes of speaking time. My wife's talk was well within that time limit but I spoke for around 19 minutes. Hopefully, some of the audience found the talk useful.

It took me over two days to prepare my speech. I had it written down because I wanted to be sure I do not miss certain important points which I wanted to share. The following is the basis text I used for today's talk. Of course, the actual delivery itself included a few spur of the moment adjustments and additions :

"Supporting Loved Ones Living With Psoriasis

By : Mohamad Fadhil B. Ismaiyatim

1.  Introduction

Terima kasih Sdra/Sdri Pengerusi Majlis. Bismillahirahman nirrahim. Assalamualaikum and good morning to all.

My name is Mohamad Fadhil. I am the husband of Rashidah Md Amin, who as you have all heard, is a long-time sufferer of psoriasis. Thank you to the organising committee for inviting us to this event. I have been asked to share my experience as the spouse of a psoriasis sufferer, how our family has coped with the situation and the support that we gave to my wife from the very start.

I had not thought that what I’ve done as anything special. To me, it was mostly routine and second-nature. Of course, a bit tough at times but generally okay. Perhaps, when viewed from another perspective, I guess there could be something worth sharing and I hope that some of you may find my talk useful.

2.  Background

When I first got to know my better half, she wasn’t inflicted with the disease yet. Before we were married, she had smooth beautiful skin… what Malays would call as kulit hitam manis. (of course now, after being married for 28 years…. Still manis laa J. Our anniversary was just 3 days ago).

A few months after we got married, she complained of having skin problems. Initially it was spots, like rashes. Then her skin became dry and scaly. The skin on her scalp starts to fall off in patches. She had itches and it became quite uncomfortable. From a small area of skin, it then spread to the whole body.

At the time, she was also pregnant. The 1^st assumption that came to mind was that the disease appeared because of the pregnancy, because of the body’s hormonal changes. Her skin would hopefully return to normal after giving birth.

At first, we went to a private Specialist Skin Clinic for treatment. At that time, I had this belief that Private Specialists would be the best course of action. They would have all the answers, all the correct treatments and all the cures. I have since then, not believed it to be entirely true, the reasons of which would be clear towards the end of this talk.

It was at that 1^st consultation that I learned what the ailment is called. Psoriasis, the specialist said. I’ve never heard of it. It was even difficult to pronounce…. the sound does not follow the spelling.

Psoriasis…. Silent `P’. I am uncomfortable with words like this… you know, words like Pseudo or Psycho. Creepy kan?

Anyway, like it or not, I have to get used to it. The specialist then continued to tell us a bit about the disease.

What is the cause? Don’t really know…

Is there a cure? No, not yet…

How do we treat it? There are a few ways, we have to try…

Is it serious? Ummm, depends. It can be mild… it can be serious.

Depressing, isn’t it.

Is it contagious? No…    At last, some positive information. Positive for me, maybe… but still does nothing to improve my wife’s hopes.

The specialist gave me some booklets to read. I later searched for more reading materials to find out as much about psoriasis as I can. Of course, not enough to be an expert like Dr Choon laa… just enough to know what we are facing and what options are available. At that time, there was no Internet… jadi tak boleh simply nak click and tanya Pakcik Google, sebab masa tu dia belum lahir lagi J. So it was old-school style research, at first. Later when Internet became available, I visited medical and health websites. I downloaded articles. But after a while, you reached a stage of having known as much as you need to know. Going any further would mean that you might as well become a medical student.

Among the first treatment methods the specialist did was the ultra-violet light therapy. I don’t know what the UV machine looks like because I did not see it. I guess it looks like those sun-bathing machine that Matsallehs use to get an artificial tan. This went on for a few times, without any noticeable improvement. And it was expensive. We were a young couple at the time, just starting our family.  We made the decision to stop seeing the private specialist.

At that point of time, I had my first thoughts of inadequacy… am I shirking my duty of being a responsible husband? In trying to run away from giving my wife the best possible treatment?

From then on, we went to seek treatment at government hospitals and have not looked backed ever since. My better half is a very regular customer of HSA. You just have to take a look at her appointment booklet. It’s tattered and torn and stapled all over. But I guess it is the same for all skin disease patients J.

3.  Challenges

Ok then… I would not touch on the disease itself. The severity, the various treatment methods. That, I’m sure is common knowledge amongst today’s participants. What I’ll try to do is to talk a bit about the challenges and the expectations.

a)   Level of understanding

Psoriasis is by comparison, relatively not well-known. Compared to other chronic ailments such as diabetes, hypertension or even cancer. Of course, I do not mean to say that it would be better to have the other diseases… far from it; no one would wish to be inflicted with illness of any kind. It’s only that those sorts of diseases take less explaining to family members and friends.

When I attend friend’s or family functions alone, I would surely be asked, where’s the wife? Normally, I would just answer, she’s not so well and can’t make it. This, in the hope that it would suffice and there would not be a follow-up question. But if the next question is, dia sakit apa?... I would tell the truth, she has psoriasis. I would then have to be prepared to answer a series of additional queries. Ten times out of ten, the person asking the question has not heard of psoriasis before.

Of course, people ask us questions because they mean well. They are concerned . They genuinely want to know. .. Kebanyakannya lah. Sometimes you get one or two individuals who are the kay-poh-chee type, tanya soalan mengalahkan Special Branch J.  But it’s okay lah… human nature kan.

Over the years, I have developed a standard set of answers to the expected questions. I have condensed them into 4 or 5 sentences that would satisfy the general curiosity, without leaving the questioner feeling offended and without me needing to go into lengthy explanations. Nowadays, if the enquirer is a bit educated, I can say, google `psoriasis’ if you are interested to know more.

b)   Alternative medication

Next to answering questions about psoriasis, another challenge is getting suggestions or advice from relatives or friends about alternative treatment methods. I am sure many of you know the feeling.

“Have you tried this method? I heard that so and so took this medication and he became well. Don’t eat prawns or crabs… they are not good for you. Try drinking alkali water, this lady had sores and after drinking the water for 2 months, her skin became beautiful again.” Etc. etc. etc…

The suggestions for alternative medication or treatment come in various forms. Herbal or dietary supplements, many types of lotions, homoeopathy, traditional kampung-style methods… these are some examples. We tried a few, but really it was just to `jaga hati’ the person who made the suggestion. No need to appear as arrogant.

Perhaps the most annoying of such suggestions, are those coming from people with certain agendas. Those pushing the sales of certain products (consumable or equipment) and claiming the effectiveness of their items based on testimony of other users.

So how do I deal with such situations? I would politely say that the missus is under a specific medication regime fixed by the hospital and this cannot be interfered with other methods. But thank you anyway.

c)    Daily lifestyle

The toughest of all challenges is probably adapting our lifestyle to suit the situation of my wife being a psoriasis sufferer. We are human beings and by nature, we like to be with or around other people. That’s why we have friends and interact with family members.

Psoriasis is a skin disease. This means that the disease is visible. It is on the outside as much as it is on the inside. It affects physical appearance. It is human nature to want to look good. Having to carry such an ailment is emotionally stressing. My wife has mentioned the feeling of low self-esteem, embarrassment and other difficulties.

How do we handle the situation?

By accepting the fate as it is (takdir) and adopting a positive attitude as best as we can.

Of course, it is easier said than done. But that’s the way it has to be.

a)    Say or acknowledge what the problem is.

b)    Then do something about it.

There are no short cuts. There is no need to hide, or tell untruths, or isolate ourselves. There is no need to measure ourselves against other people’s opinions.

It does not mean we live a carefree life but we do things with thought and care and with minimum reservations. We traveled, we have dinner at restaurants, we attend functions… as and when we feel it is convenient and comfortable to do so. The fact my better half has psoriasis is never thought of as a major hurdle.

We visit friends who truly understand our situation. We stay away from people who do not appreciate our presence.

4.  Conclusion

Without doubt, the most trying time I had was when my wife was hospitalised last year and the year before. It was the severest form of the illness that she had experienced.

Every day she was in hospital, I would leave the office on the dot at 5.30pm to head to HSA. Normally I would be the last one to leave the office. So leaving on the dot, would naturally invite questions from my staff. So I tell them, my wife’s in hospital, which of course would bring the next question… dia sakit apa?

As you have heard earlier, her complications included infection on her skin (pustules) and allergy to antibiotics. Her skin was peeling off in strips like she was molting (bersalin kulit). Each brush of her hair would cause clumps to fall out. I even remarked that her hair loss is similar to what happens to chemo-therapy patients.

But the most despairing moment for me was when I reached the hospital ward one day after work. When I entered the room, she was sitting on the bed, looking outside the window. As she turned, I saw that the skin on her face was peeling all over. Her eyes and cheeks were puffed. She was having an allergic reaction. She was in pain.

Over the years, the areas mostly affected are her body and her scalp. Very seldom, her face. At that moment, I didn’t know what to say. You know, there’s this phrase – crying inside. I guess that was I did… because I could not let her see my tears.

My simplest form of support I presume, is just by being there. There are many a time when we know that there is nothing much we can do. Of course, we pray to the Almighty for help. But it is also important for us to remain calm, cool and patient. If we can’t help to solve the problem, the least we can do is not to add to it.

For the past few months, my better half seems to be responding well to this latest regime of medication, alhamdulillah. I would not want to see her being hospitalised again. I don’t think I can be crying inside the next time. But with psoriasis, we can never know. There is no guarantee. We hope, we pray and we keep our spirits up.

Ending remarks

Before I end my talk, I’d like to express my appreciation to Dr Choon and her team at the Dermatological Department of HSA.

Throughout my wife’s various stints of being in-patient, I observed how dedicated the doctors and nurses of HSA were. I have nothing but praise for them. With the recent mishaps that have occurred, I’m pretty sure the staff there is working under very serious constraints. I have nothing but praise for them. How I wish the government would spend as much money as possible on healthcare in their annual budget.

Thank you for doing such a wonderful job. For my wife and for all those skin patients who have faith in you.

Thank you."

At the auditorium entrance of HSI, before the event

Opening remarks by Puan Marina, Deputy President of PAJ

Long-time psoriasis sufferer, Puan Rashidah Md Amin

Last speaker of the day, the spouse to Puan Rashidah