Wearing my patches with Pride!

Now that I'm in my mid 30's and have lived with psoriasis for 31 years now I can look back at my life and see what impact having the condition has made on who I am as a person.

As an adult I have been lucky to be confident enough in my extra skin to have never felt depressed or socially isolated because of it.  Growing up with the condition and having a very supportive family have helped me to realise that, even when I was being bullied, it was because of the lack of education that others had about psoriasis rather than anything I had done. I know there are many other people out there who do deal with depression and feelings of isolation on a daily basis because of their psoriasis and I wish there wasn't.  Not everyone feels comfortable showing off their extra layers of skin to the world and I can completely understand that but I can say from the bottom of my heart that doing so doesn't really make much difference to most adults out there.

Since I left home at the age of 17 to go to university I have never once hidden the fact that I have psoriasis.  At times my skin has been so bad that I had maybe about 20% of my total body surface free of plaques but I would still get my splotchy "milk bottle" arms and legs out in the summer sun.  The sun is good for treating psoriasis so covering up is not only uncomfortable on really hot sunny days but also the wrong thing to do. It took me being in a completely different area of the country to find this confidence and it all stemmed from a conversation with a really cute male student in my halls of residence...  He later became a boyfriend but we lost touch when he left to go to another university.

The conversation revolved around why I was always in cardigans and jumpers on what were really unusually warm autumn days in the north of Scotland.  When I said it was because I was embarrassed to show my arms because of my psoriasis his first request was to see them and then his first question after that was "What causes it?"...  That very first conversation with someone about why my skin looks patchy, red and flaky was a real eye opener.  Almost overnight my attitude changed.  I had spent so long being ridiculed for having psoriasis that this first encounter with someone who wanted to learn more changed my outlook and attitude completely.  That was the day I started wearing my patches with pride.

All these years later I have had a few relationships and now have a loving husband and a darling daughter who never notice my skin is different from theirs...  My daughter thought it strange that people didn't have psoriasis when she was younger, my skin being what she had always thought was "normal".  I have many close friends who don't seem to notice either, or if they have they have asked me to educate them about it.

I won't lie, I have had many treatments over the years to try to clear my skin and make it less painful.  I still use dovonex and also dovobet but I have had pUVA and UVB therapy and more coal tar treatments in hospital over the past few years.  The UVB worked amazingly, my skin cleared completely but sadly 3 months post treatment it came back.  The second round was not as effective as the first and now I have lovely, densely freckled areas on my arms and legs where the largest patches of psoriasis were.

The UVB therapy helped me in that it reduced the coverage of my psoriasis to a level that is manageable with topical ointments.  At one point I was having to use dovonex every 2 days so as not to use more than 100g in a week my skin was so badly covered. Now 60g of dovonex will last me up to 4 or 5 weeks.

Studying for a degree in Microbiology has given me great background to read through scientific papers that cover research being carried out into the causes and treatments of psoriasis and psoriatic arthritis and I use this to help educate my friends and family (or anyone else who happens to ask me about my skin) about the condition.  I would truly love to be able to educate people more, I know that there are still young kids out there who are going through the kind of childhood I had and teenagers struggling with socially defined beauty standards set to unattainable levels by magazines, pop stars and movie stars and while I am no model I'd love to do a "How to look good naked" type event with Gok Wan, just to show people that there's nothing wrong with having psoriasis.

I have one more blog entry to write about my life (so far) with Pso and PsA and that's about my 20 year battle to get diagnosis and treatment for psoriatic arthritis.  After that I plan on going into some depth about the underlying causes and biological processes that lead to both of these conditions.  The research for this will take quite a bit of time but I am aiming to have at least 2 posts a month on here.

As if being a teenager isn't bad enough...

Being a teenager is a difficult stage of life under normal circumstances.  Your body starts to change shape as you develop breasts and hips (at least if you are a girl), puberty causes growth of hair in places you'd maybe rather it didn't, hormonal changes lead to acne and horrendous mood swings, your sweat glands become more active leading to embarrassing odours from your feet, armpits and groin, your body goes through growth spurts so quickly that your brain can't keep up leading you to become clumsy, you have difficulty in remembering things, your parents seem like the biggest monsters the planet has ever seen, you have pressures from everywhere (peers and magazines/TV/movies/pop idols) to look a specific way and you have the strongest of urges towards members of the opposite (or same) sex... This is the time of life that having psoriasis is worst, at least in my experience.

I was an early developer, I was one of the youngest kids in my class but one of the first to have to start wearing a bra.  I started going through puberty at the age of 10 when I was in my 6th year of primary school. My GP was quite confident that my psoriasis would ease off while my body was going through the massive hormonal changes that were ahead.  Unfortunately for me he was totally wrong.  

As my body developed into that of a woman's my psoriasis got worse.  Where there had been small patches there were now large angry looking red areas.  These patches grew in size and became increasingly inflamed and itchy.  The flaking skin was a source of constant embarrassment to me as I couldn't wear anything without it being coated in white skin flakes.  Psoriasis patched on my stomach and back started to join up and I ended up with patches covering almost 60% of my stomach and back.   The plaques on my scalp became a lot worse too, the plaques were so thick that when I washed my hair my head would feel like it was covered in massive lumps. The plaques flaked off in large clumps when I would brush my wet hair and in the mornings I would wake up to find my pillow covered in skin flakes. My arms and legs were a different story.  I had a couple of medium patches on my lower arms but my legs remained clear allowing me to feel comfortable enough to wear a school skirt in the summer months without having to wear 80 denier tights.

During the final few years of primary school the name calling and nasty comments had subsided.  Either that or I had just gotten to a point where I ignored them.  I was still shy about changing into my gym kit in the shared female changing rooms because of how my skin now looked but I was more worried about the other girls noticing the changes that had happened to my body because of puberty.  I became less withdrawn in those years and became more sociable and outgoing.  That was about to change, and not for the better.

In the last few months of primary school I had no idea what lay ahead of me in secondary school.  I was happy and excited about being at "the big school" and looking forward with some concern to the prospect of having a number of different teachers to remember and a whole school to learn how to navigate my way around.  At least this was something I wasn't dealing with alone, all of my classmates were too.

I don't know why I didn't realise that the bullying and name calling would become an issue when I went to secondary school.  This time though it was much worse than what I had to deal with at primary school.  I was separated from all of my friends and classmates from primary school and only saw them at break time and lunch, if I saw them at all.  They were all busy making new friends and setting up new social groups.  Again I found myself being the subject of ridicule and name calling.  It all started on the first day of P.E. when we had to get changed into our gym kit in the girls changing room.  Someone, I can't even remember her name, noticed my skin and let out a disgusted shriek which promptly summoned the P.E. teacher who assumed something was wrong.  The comments by this girl about me having scabby skin and a disease that she didn't want to catch was the start of 4 absolutely hellish years.  Word spread rapidly through our year group about my skin and then to other years through older siblings.  I couldn't walk down a corridor without someone making some sort of snide or disgusting comment.  

Later, the bullying would get physical.  I am not ashamed to say I was involved in at least a couple of fights because of the name calling, I never started the confrontations but had learned via martial arts how to defend myself.  My mum had taken me along to her classes when she had been told by teaching staff that I had become the target of some pretty vicious school bullies and to this day I am very grateful that she did. 

Withdrawing into myself was really the only thing I could do.  I had few friends, most of the people I associated with at school were social rejects like myself.  The only thing we had in common was that we didn't fit in, at least in the beginning.  Later in my 2nd year I joined a new local youth theatre, this was a fantastic activity for me.  I could spend time being someone, anyone, other than the person I was.  I played so many different roles from the ghost of a dead pigeon (don't ask) to an american tourist.  I could hide behind the personas I was performing as and not be the vulnerable 13 year old that I was.  All the while I was using creams, lotions and emollients on my ever worsening skin.

It was about this time that another worrying and inconvenient aspect of my psoriasis raised it's head...  I started to develop skin allergies.  It started with blistering and burning sensations when I used my coal tar creams and water filled blisters on my scalp from the coal tar shampoo.  Gradually I became allergic to a number of laundry detergents (to this day I can only use Ariel non-bio) and fabric softeners, aerosol spray deodorants and body sprays, perfumes, moisturisers, soaps and make up.   Just what you don't need as a teenager!  Due to the reaction to coal tar my GP prescribed a new medication for me to try.  I looked at the vaseline like ointment and doubted that it could possibly ever work.  To my surprise within a few months of starting to use Dovonex (Calcipotriol) ointment my skin was less dry and the red patches were beginning to fade to a light pink.  Sadly it wasn't to last long.  Within 6 months my skin had adapted to the dovonex and the patches, while less flaky, had started to redden and spread.

My life over the next few years was difficult.  The constant bullying because of my skin and the feelings of inadequacy as a person that it caused led me to become a borderline anorexic.  Looking back the reasons for this were simple.  I couldn't fit in with the social groups that I wanted to because they were primarily concerned with looks and my psoriasis was a barrier to this.  I wasn't by any means an ugly teenager, I actually consider myself to be a fairly attractive woman and I was smart (another outcome of being so withdrawn and reading/studying a lot) the only thing that kept me out and stopped me being as popular as the other girls in my year group was my skin.  This lack of control led me to desire control of all the other aspects of my looks and the one thing I could control was my figure...  There was no way I could avoid family meals at home (I was the eldest of 4 kids and we all ate together with my mum and step dad) but I did serve myself small portions.  I never ate breakfast and spent my lunch money on cigarettes.  I think I survived on less than 1000 calories a day for about 6 months. 

There was one person who was responsible for helping me overcome what could have potentially been a serious condition.  I had known him for a few years as we lived in the same street and we had always been friends even though we went to different schools...  He was a good looking guy and always had girls chasing him.  Imagine my surprise when he asked me to be his date for a school disco.  I can't say that I hadn't been interested in boys before he asked me out.  I had plenty of crushes that I had been too scared to act upon fearing (in my mind) the inevitable rebuttal and ridicule.  I knew that many of my school friends had serious boyfriends and were doing things with them that they really shouldn't have at their age.  For me the prospect of any boy seeing me without clothes on was pure anathema. I couldn't bear to look at myself in the mirror never mind let anyone else see me.  

Fearing that his invitation to be his date was a joke I was actually very mean to Michael. I said some hurtful things to him and actively went out of my way to avoid him.  I had no way of knowing that he had actually been serious until he sat me down and explained that he'd had a crush on me for months. Me??  with my skin??  Apparently beauty is more than skin deep... He liked my personality, liked that I was smart and that I was a complete tomboy. Having known me for years he didn't even notice my psoriasis any more.  We became a couple the night of that school disco and only separated when I left home for Uni in September of 1994.

I continued to use dovonex as my main treatment for my psoriasis throughout the remainder of my secondary school years.  When my skin became used to it I would stop using it for a while then go back to it.  At one stage I was given a steroid cream, I cannot for the life of me remember what it was called but it had to be put on to the skin for about half an hour before being washed off.  Within 2 weeks of using it my skin was burning, itching and blistering.  The GP stopped it immediately and back to the dovonex I went.  Sadly by the time I left home at 17 my psoriasis had spread to my legs and even my groin and breasts.  Nothing I did had any effect, the dovonex and moisturising regime kept it at a manageable state but it was always there, threatening to dry out and become itchy and flaky.

That was to be my regime for the next 10+ years of my life.

I know that the pressures on teenagers today are just as hard (if not harder) than they were in my youth.  My daughter is just reaching her teenage years and the pressure to have the right clothes and gadgets is something that she is just beginning to experience.  I am thankful that she didn't develop psoriasis like I did because I know how much more difficult it is to fit in for teenagers who don't conform to beauty standards.  

Looking back on my teen years I realise that the bullying that I went through actually made me a stronger adult.  I very rarely cover up my psoriasis these days, having learned that the important people in your life will get to know you irrespective of how you look.  I'm a lot less sensitive to comments about my appearance than I was, and regularly find myself lecturing random strangers on psoriasis because of comments they have made.  I know there are others out there who have not yet reached that stage of their psychological journey, mainly because they have not been living with psoriasis for very long.  It can take time to grow into your extra skin but you will do it.  One thing I know for certain is that generally as adults we don't really notice the differences in others and are more accepting. There will be the odd bad apple, but you are never to blame for their lack of education or their social ineptitude...  

Psoriasis - The early years (age 4 - 11)

My life with psoriasis began at the age of 4.  I can clearly remember the incident which lead to the discovery and diagnosis of psoriasis.  I was at my paternal grandparents house watching "Dot and the Kangaroo" on video with my cousins.  The ending is quite a sad one and, like any other child of that age, I was very upset.  In tears I tried to get away from my cousins (both male) who were laughing at me for being a baby and ran head first into the door handle of the lounge door (the door being opened by one of my parents).  At first I just had an egg on my head and it hurt but that bump was the start of something which would come to be a major part of my life.

A couple of weeks later I couldn't stop scratching at the area I had bumped and my mum noticed that my clothes seemed to have dandruff flakes on them.  She had a look at my scalp and decided to make a doctors appointment for me.  My mum was well aware of psoriasis, my maternal grandmother had the condition, so she knew what she was seeing instantly.

My GP was really good.  It was confirmed that I had scalp psoriasis and he gave me special shampoo and lotions to use on my scalp and hopefully keep it relatively calm.  The shampoo and lotions smelled absolutely vile..  they were all coal tar based and I swear you could smell me coming way before you could see me but they helped to keep the flakiness and itching under control, for a while.

For the majority of my childhood years the psoriasis was confined mainly to my scalp.  Thankfully it was hidden by my hair and only really became an issue when it was itchy or flaky.  Then around age 10 things began to change.  My body began to undergo the early stages of puberty and my hormones started to kick in...  sadly this was the last time I ever remember having completely psoriasis free skin.  The scalp psoriasis started to creep forward past my hair line, appearing on my upper forehead, behind my ears and at the nape of my neck. I could hide this by keeping my hair down and having a fringe but I couldn't quite do the same when it started to appear on my body.

By age 11 I had patches of psoriasis on my arms, stomach and back.  They were fairly small patches but they were there and very noticeable, not only to me but also to the kids I went to school with.  Queue the name calling and nasty comments...  The most common names I was called were flake, scabby, scar, and snowflake.... As hard as my GP and I tried there just seemed to be no way to make the patches smaller, less red, less flaky or to go away...  I worked my way through creams, lotions, bath and shower emollients and moisturisers but nothing seemed to have any effect. I spent every night coated in coal tar creams, my pyjamas lasting a month or two before they had to be thrown out and replaced because they had become so badly stained and coated with coal tar.  I walked around in a cloud of coal tar, not only from the creams but also the shampoo and bath emollients that I had to use daily.  My skin took on a brownish colour from the treatments and I looked like I was constantly filthy.  Hospital treatment came next and despite being covered in coal tar, wrapped in clingfilm and many other unpleasant smelling and uncomfortable treatments absolutely nothing helped to clear up my skin.

The name calling got more common.  I was treated as if I had a contagious disease by most of my classmates, even people who had been considered some of my best friends started to treat me differently.  Thankfully I had a couple of very good friends who didn't change their attitudes to me and I am happy to say they are still friends to this day (thanks Vicky and Davina).  I even began to notice that adults would look at me with repulsion when I wore t-shirts or tied my hair back on summer days.  This is when I started to become more insular and less outgoing.  I took to reading books and spending time playing alone in my garden and on the street I lived in.  I would try to avoid situations where I had to mix with people I didn't know and I would try to avoid the looks of disgust and pity from those around me.  One thing I couldn't avoid though was school and the nasty, spiteful comments that were made about and to me on a daily basis.

Looking back I am surprised I survived those last couple of years of primary school.  I learned a very valuable lesson back then that I only acknowledged when I grew up..  The kids at school were mean to me, that is something that could not be denied, but they didn't know any better...  they had no comprehension of the hurt they were causing with the name calling and the way they excluded me socially but the adults were a different matter all together.  They may not have called me names but the way they acted towards me at what was a very vulnerable and important stage in my social development was disgusting.  They should have known what effects their attitude would have on a young child, but then again, unless you have a disfigurement you have no idea what it feels like to be different so I suppose they can't be blamed for their inability to show compassion or to show their kids how not to behave.

These early years were instrumental in my becoming the person I am today.  My love of reading stems from those times where I wanted to escape the ridicule, this is where my love of role play gaming came from because for a small period of time I could be someone, anyone else and live for a while with perfect skin and perfect looks....  These years are also the reason I became so involved in amateur theatre as a teenager, again I could be someone else and not myself.

Without the bullying and name calling I wouldn't have the interests I have, I spent time reading and learning rather than out playing with other kids and as a result I have grown up to become an intelligent woman.  I concentrated on being the best I could be at everything I did so that my looks wouldn't get in the way of my career/employment and I have the bullies to thank for helping me get where I am today.  Had they not treated me with the contempt that they did I would not have worked so hard to "show them" and would probably be stuck in the same dead end hole a lot of them are still in to this day.

I know there are many people out there who have just embarked on their journey with psoriasis, they are where I was at age 4 - 11, afraid to socialise, hiding their skin condition away under long sleeves and trousers, and my heart goes out to them.  I know how hard it can be to be a teenager and to try and fit in while being so different from everyone else.  I know how hard it is to be an adult in the workplace and trying to not have your skin condition noticed by colleagues.  I also know that each individual has to make the journey to acceptance of their condition on their own but I would like to offer support from one who has accepted their lot to many others who are working on it and hope that my writing about my experiences will give hope to others who are struggling to live and survive with psoriasis.

Psoriasis - A survivors guide

I thought it best to do a little bit of an intro before I got into the tale of my lifetime of dealing with psoriasis (Pso) and psoriatic arthritis (PsA) so that you folks reading this know a little bit about me.

I'm a mum, wife and I work full time.  I have a degree in Microbiology and have worked in antimicrobial drug development for the past 2 years, before that I worked in cancer diagnosis research after graduating from university in 2009. Before I went to uni (in my late 20's/early 30's) I worked in accounts, working in everything from accounts payable to management accounting and payroll.  I enjoyed the jobs I did but there was always something missing from them which is why I made the decision to return to university as a mature student.

I have a number of hobbies and interests including photography, baking, cooking, jewellery making and reading (both books and graphic novels/comics/scientific journals). I love listening to music and trying to play instruments (more on that later). I like going to the cinema with my husband on our "date nights" and am basically a geek girl who loves horror gaming (both computer and role play gaming), horror, fantasy and sci-fi fiction but I have an intense dislike of Star Wars. I used to be a pretty decent cross country runner and martial artist in my teen years, I was also a pretty good figure skater and Latin/Ballroom dancer too.  Some of these hobbies have fallen by the wayside as life has intervened...  it's pretty difficult to keep up the things you enjoyed as a teen when you have to work and run a home.

I've been living with Pso for pretty much the whole of my life, I was diagnosed at the age of 4 and am now in my mid 30's.  Over the years the condition has changed, flaring and dying down as my body has gone through different phases of development but always present.  It has shaped my relationships with people, my outlook on life and my attitude to the challenges I have faced over the years.

PsA became a reality for me in my late teens, but it wasn't until after having my daughter in my early 20's that I finally found a GP who would believe the symptoms I was having were not a case of growing pains or a psychosomatic condition.  I am still awaiting a rheumatological diagnosis 12 years after first being diagnosed by my GP and will discuss the problems surrounding getting a diagnosis at a later point. The past couple of years have seen a marked deterioration in  my joints and mobility/dexterity and the medications that can be prescribed by my GP have done little to really help, treating the symptoms rather than the condition.

I have called this a survivors guide because I refuse to be classed as or called a "sufferer", that word says to me that I am defined by the condition and am limited by it, something that I refuse to accept.  You can only really suffer from something if you allow yourself to be defined by it and my hope is that people will read this blog and realise that the condition does not define who you are as a person.

My hope for this blog is to give support and advice to others who are surviving with psoriasis and/or psoriatic arthritis.  I plan to use my scientific background to discuss the biological processes that are believed to be responsible for the condition in a way that makes it easy for non-scientific folks to understand.  I aim to be open and frank about my experiences, both good and bad, and the interactions I have had with people over the years and stages of my life that have determined the person I have become and my attitude to my condition.  I hope that this will help those who have just been diagnosed to deal with what can be a very life changing diagnosis...  maybe not physically but certainly psychologically.