KMYoung.com

I started something of an uproar on Facebook today after casually mentioning I was headed for a chemotherapy treatment.  While it has become a part of my everyday life, to those I don’t communicate with much or those not familiar with my disorder or treatment the word ‘chemotherapy’ is an attention-getting and terrifying term.

Hi, my name is Kevin Young.  And I have Psoriasis.

There, I’ve said it.

Psoriasis is probably one of the longest known illnesses of humans and simultaneously one of the most misunderstood.  Some scholars believe psoriasis to have been included among the skin conditions called tzaraat in the Bible. In more recent times psoriasis has been frequently described as a variety of leprosy (though it not). The Greeks used the term lepra (λεπρα) for scaly skin conditions. They used the term psora to describe itchy skin conditions.  Psoriasis is a non-contagious disorder which affects the skin and joints by causing itchy red, scaly patches which rapidly accumulate.  It is chronic and recurring… and most often, lifelong.

So why am I telling you all of this, many of whom I do not know and will never meet?

Society tells us we should hide the ups and downs of our personal lives, or at least the downs.  So we try to hide our problems in order to fool those around us.  Why?  Perhaps we wish to be seen as strong and viral – something more than human.  Or perhaps we don’t want the attention.  Often, I am afraid, we don’t want the stares and concern – the misunderstanding that comes from lack of knowledge.

Sally and I are pregnant with our second child.  In a recent discussion about Downs Syndrome we both agreed that we would not mind for a moment having a child with it… but the hard part was thinking about the way others would look at us, most likely with pity.  Perhaps that is why our culture seeks to hide and avoid any physical abnormality.

My psoriasis IS a physical abnormality.  But I do not wish to hide it.  Of course, it would be easier to do so, but in so doing I would be hiding a part of who I am and for better or worse it IS a part of who I am.

Surely, some look at me with pity.  And surely I have looked with pity at others who are unable to hide their abnormality.  But that must not keep me from being honest and open.

I sit writing these thoughts from the Waiting Room of a doctor’s office.  I’ve spent a lot of time in this room over the last three years.  My treatments began with topical creams and solutions.  They progressed through UV Light-ray therapy that is not unlike standing in a tanning bed.  Eventually I moved to a much scarier regimen of oral medicine that could only be taken for a short period due its destructive effect on the liver and digestive system.  We chose this one over lesser treatments because of our desire to get pregnant.  A few months later we found out Libbie was on the way and we knew that we’d made the right decision, and that life goes on.

After I was forced to come off the oral treatments I went to a new therapy that required self-administered shots on a weekly basis.  That treatment had few side effects, but unfortunately did not adequately control the disease.

Now I’ve progressed to a more long-term, but no less scary, treatment called a biologic therapy.  It is basically chemotherapy, a drug used to treat autoimmune disorders.  While it is a drug originally approved to treat severe arthritis, one of its side effects is immune system suppression, which in turn helps Psoriasis.  So every 6 weeks I go to a treatment center and relax for several hours as the drug is administered through IV infusion.

It all sounds scarier than it really is.

The cause of Psoriasis is unknown and there is no cure.  One doesn’t die from it, but probably will die withit.  Since the treatments generally all suppress the immune system, there is a higher risk for cancer, heart disease, and lots of other terrifying problems.  But life is unsure for all of us and out of all the ‘crosses’ I could be required to bear, I do not think this one comes close to ones that many others are required to carry.

So I survive, and I thrive.

It is now a part of who I am, and to know me know means you should also know this part of me.  It changes who I am on the outside as well as on the inside.

Now you may begin to understand my desire to maintain a healthy bodyweight and active lifestyle.  By so doing, I help minimize the effects of my disorder and perhaps even one day overcome it. 

The phrase “the heartbreak of psoriasis” is often used both seriously and ironically to describe the emotional impact of the disease.  The term can be found in various advertisements treatments; conversely, it has been used to mock the tendency of advertisers to exaggerate (or even fabricate) aspects of a malady for financial gain.

Be assured.  There is no heartbreak here.  Sure, it’s not something I would choose to battle… but this world is not my home, I’m just passing through.  This too shall pass.

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