Having to live with any chronic disease is difficult, but having to come to terms with one as visible as psoriasis can be be especially hard at times. Often, the psychological effects of coping with the disease can be worse than the disease itself. In this article, J.P. tells us how he has grown to live with the condition over the past 20 years.
Diagnosis and acceptance
"I have had to live with psoriasis on and off for the past 20 years. I first developed the condition shortly after my 18th birthday. At this age, I was already self-conscious about my image and having this condition thrust upon me definitely had a detrimental effect on my life, both physically (the plaques were very sore and itchy and often bled) and psychologically (constant questioning, funny looks and even rejection from other people, etc...). However, as the years have gone by, I have learned to cope with the condition, which is not always easy. "
Seeking medical help straight away
"When psoriasis appears, it can be very easy to go into ostrich mode and bury one's head in the sand. However, ignoring it will not make it go away as if by magic (I know this from first-hand experience). The faster you seek medical help, the more likely you will be able to successfully manage the condition. Blitzing affected areas with topical steroids as soon as they appear will very often clear it up. However, if you leave small plaques untreated, they will invariably increase in size and thickness and become much harder to treat. You may think that you are troubling your GP unnecessarily, but psoriasis is no less important than a chest infection or any other illness or disease... Leaving the disease untreated will have a negative impact on your quality of life."
"To say that psoriasis is unpredictable is an understatement. There is no single trigger for the disease. My own triggers include streptococcal throat infections (followed by episodes of guttate psoriasis), stress (scalp psoriasis, with some temporary hair loss) and even allergic reactions. Genetics are also a key factor in the development of the disease. In my case, there is a strong history of psoriasis in my family. Discovering what triggers off your psoriasis may take time, but is an essential step in helping you to manage the disease."
"Over the years, I have tried several topical treatments, which usually are steroid-based creams and coal tar-based shampoos. Some of these have had varying degrees of success; some have had no effect whatsoever and, in one particular case, the cream prescribed even managed to strip of layers of healthy skin. It is not recommended to use these creams over a prolonged period of time, as they may damage the skin and, in some cases, they may lose effectiveness as your skin becomes used to them."
"I have also tried both UVB and PUVA phototherapy. These treatments - for me, at least - are particularly effective forms of treating psoriasis. That said, they can have some notable side-effects, namely sunburn, increased light sensitivity, folliculitis (infection of hair follicles) and nausea. For this reason, phototherapy courses (normally 30 sessions) are normally only prescribed in more severe or "stubborn" cases of psoriasis. I must stress that phototherapy is not the same as going to a tanning salon. The sessions are carried out in a controlled environment, usually in a hospital, with the dosage of UVB or PUVA light being increased very gradually with each new session by qualified professionals."
"I have not tried (and hope that I will never have to try) systemic treatments. This form of treatment is being used in the most severe cases of psoriasis and also where psoriasis has not responded to topical treatments and phototherapy. Drugs that slow the production of skin cells and suppress the immune system are administered and can have some serious side-effects."
"There are a number of things you can do to make your psoriasis more manageable. My advice is as follows:"
- Learn more about the disease: The greater your understanding, the easier it will be to manage.
- Look at all options when it comes to treating and managing the disease: there is some evidence that nutrition may play an important role.
- Good personal hygiene: This is key so as to prevent plaques from becoming infected.
- Daily moisturising: This will stop plaques from becoming itchy and flaky. My dermatologist prescribed me parrafin-based moisturisers (Cetraben and Double Base) and these are very effective, albeit a tad messy. However, unscented everyday moisturisers such as Nivea Creme can also be just as good.
- Consult your GP as soon as you notice any plaques developing.
- Seek a referral to a specialist if your condition doesn't improve, (word of warning, this will generally be a slow process).
- Do not be afraid to question your GP about your treatment.
- Be patient: Unnecessary worrying or stress may worsen your psoriasis, as well as having other detrimental effects on your physical and psychological health.
- Try some kind of relaxation activity, such as yoga or Tai Chi. Your body will also appreciate the rewards that exercise has to offer.
- Do not feel embarrassed by your condition: This is easier said than done, but a more proactive and positive frame of mind will help you answer awkward questions and social situations.
- Sunbathe (without overdoing it and using protection): Sunlight works in the same way as phototherapy. Don't be afraid or ashamed to expose affected areas in public.
- If your psoriasis has affected your self-esteem or self-image, try contacting a support group or a life coach. Sharing how you feel in a non-judgmental environment will help you.
- Do not fall for "guaranteed cure" sales gimmicks. At present, there is no cure for psoriasis, so you would just be wasting your money.
- Dead Sea mud and salts: There is no proof that these actually work. You may be better off saving your money and making a trip to the actual Dead Sea in Israel (the increased exposure to sunlight and drop in stress from everyday life are probably more effective).