impact on life

Impact On Quality Of Life

DoctorAccording to a recent survey on health care provision to patients with molluscum contagiosum, one of the most common pieces of advice given by health care providers was :

“Don’t be concerned. This will go away”.

According to the World Heath Organisation, the definition of quality of life  is :

“the individuals’ perception of their position in life, in the context of the cultural and value system in which they live, and in relation to their goals, expectations, standards and concerns”.

These measures are usually used to assess a person’s general wellbeing.

Health related quality of life measures are more commonly used to assess the effects of a particular condition on a person’s quality of life.

A recent United Kingdom Parliamentary Report  called ” The Psychological and Social Impact of Skin Diseases on People’s Lives” and dated April 2013, suggests it is about time that this measurement of quality of life should be made much more important than it is for people who have skin diseases.

Key quality of life issues for those of us with skin diseases, infections, or disfigurements, may include concerns about treatment, self-esteem and psychological health.

They also include concerns about work, social, sexual and leisure activities, physical functioning, family relationships, sleep disturbance and schooling.

The affects on the quality of a sufferer’s life may be very severe and very often underestimated by those not directly affected.

The fact that molluscum contagiosum infections are rarely serious and routinely go away without treatment, although this can take anywhere up to four years, means that there is very little monitoring of molluscum contagiosum and even less consideration given to the impact of this infection on people’s lives.

Granted, a straightforward dose of molluscum contagiosum may not be one of the bigger trials of life if a person has the infection for a few weeks, maybe a couple of months.

But, what about those who may struggle with it for years, or who have much worse symptoms as a result of their individual vulnerabilities?

When something really bad happens, friends and family usually gather around a person to lend support.

These friends and family members, while offering support, may act as an outlet for your feelings and frustrations throughout a difficult time.

However, in my experience with psoriasis, it is the day to day stresses which take their toll, and I agree with one study which suggested that it is the small, chronic stresses which are the hardest to evaluate.

And, seeing as I was diagnosed 37 years ago, nearly all of my family and friends have put it on the back burner.

Understandably so, as we all have a bunch of other trials, tribulations and life challenges to be getting on with.

I am the only one in my circle who is aware of having a problem skin condition, practically every minute of every day…for 37 years…and counting.

Skin problems, no matter what the cause, can often be minimised or overlooked altogether by health providers, friends and family, and even yourself.

The conventional wisdom currently offered by most doctors is to let molluscum contagiosum run its own course.

Bu, it has a common duration period of about 12 months to 2-3 years, and has been known to have a duration period of four years.

Interestingly, there  is a lot of uncertainty in terms of real facts and figures.

I mean, being told molluscum contagiosum could last a few weeks or a few years?

Who wants to be potentially covered in spots for any length of time, let alone months or years?

Add to that, the uncertainty about how long the infection may persist in you, or your child.

Yes, the unpredictable nature of the virus is well recorded, but it is a bit shocking that so many doctors, who are the first port of call for those seeking an accurate diagnosis, advice and treatment, can be so nonchalant about the whole thing.

And, dare I say it…not that educated about the virus.

In my chats with people who are trying to deal with the effects of molluscum contagiosum in their lives, they have said over and over again that the doctors do not always take the time to educate sufferers, or their families, about steps they can take to stop the spread of this stubborn, ferociously contagious virus or how to deal with it psychologically.

For the sufferer, it can develop and spread like wildfire, at an alarming and highly stressful rate on the body for many people.

Once a person has the virus, the bumps can be spread to other parts of the body by touching or scratching a bump and then touching another part of the body.

Young children may not be self conscious about the unpleasant, cosmetic appearance of the molluscum and, would not have the same concerns and fears around transmitting the infection over their own bodies, or passing it on to others.

But, older children, teenagers and adults would, and would also always be aware of the high risk of infecting others.

Emotions such as anxiety, embarrassment, despair, fear, isolation, loneliness, frustration, and shame, spring to mind.

Some health providers are marvellous about discussing these things with their patients.

But others are not, and can be downright dismissive about the impact it can have on a person or on their families.

Of course, this impact may become more serious over time, if the infection is long lasting or develops complications.

Advising teenagers or adults to abstain from sexual activity until the molluscum contagiosum resolves and the last bump has gone?

With little or no discussion about how this may impact upon them, their relationships or marriages!

Desperation may lead to agreeing to painful treatment or attempting to solve the problem yourself, for example, by squeezing the bumps.

Another alteration in lifestyle is the changes you may make to counteract the effects of the infection or its appearance.

Such as long pants and sleeves in summer.

Or, suddenly growing a beard. Or sprouting other hairy bits where you used to remove the hairy bits. Well, the advice is no shaving or electrolysis until the buggers clear.

Only one person in a family might be affected.

This could be particularly hard on an older child or teenager. living in a family where they are the only sufferers .Feeling different?  Not good.

It can be really, really, hard if no one around you knows what is going on with any skin condition.

And, YOU are the only person you know who has, or has a child with, molluscum contagiosum.

Then, there is always the reaction, or sometimes perceived reaction, of partners, co -workers, or school friends.

You may be struggling with all of it, while being daunted by your own image in the mirror.

Or having to look at those strange body bumps where you can actually see the living, contagious fluid that is the molluscum virus, while being expected to get on with it.

Hey, it’s not serious. Right?

I am not out to attack doctors. I have been grateful to them many times in my life.

But, I fully support the findings of the All Parliamentary Group on Skin which investigated the extensive impact skin diseases can have on all aspects of a person’s life which states :

“Although research into this area has developed in recent years, their remains a lack of dedicated services to tackle the psychological needs of patients with skin disease. The benefits of psychological interventions continue to go largely unrecognised, and the trivialisatation of skin diseases in general threatens to derail years of progress in patient care”.

Coming up next : Molluscum Contagiosum : Useful Tips