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 1st 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 1st
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."
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| 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 |
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| Last speaker of the day, the spouse to Puan Rashidah |
