Torty’s Story

When people ask me what were the defining moments in my alopecia journey, I often say that meeting my friend Torty Lee is one of them.  

I developed alopecia immediately after leaving school at the age of 18, and a year later, I started my studies at Edinburgh University.  I arrived at uni as a nervous fresher, still getting used to having no hair, with a brand new peroxide blonde wig!  

At that stage, my alopecia made me feel very different to my friends and peers at university.  I often got very emotional and asked myself “why me?”, “why do I have to cope with this and no-one else does?”.  I felt sorry for myself and that others were unable to understand my situation.

Meeting Torty changed all of this.  We had been friends for a while, but one night Torty opened up to me, telling me that she had Crohn’s Disease.  I couldn’t believe that my fun-loving, bubbly friend was dealing with such a difficult condition and was in awe of her bravery.  Her situation made me realise that I was not alone, and that many people are faced with situations beyond their control, but it is possible to get through them.

As Crohn’s Disease is, like alopecia, an autoimmune condition, I asked Torty if she would be happy to share her story on my blog.  Here it is…

When I heard that Ruth was doing ‘Wig Free Week’ I felt so incredibly proud of her. Not only as a friend, but as someone else who has suffered for all of my adult life with what is often considered to be an embarrassing or hidden illness. The perceived embarrassment of having one of these autoimmune diseases means that they are often not talked about or are hidden away, which is what makes Ruth’s valiant efforts to raise awareness by undertaking a Wig Free Week even more inspiring.

My Story

When I was fourteen I started to get ill. It wasn’t hugely dramatic at first and I didn’t really realise that anything was particularly unusual, but I lost my appetite, suffered with terrible stomach aches and diarrhoea, and lost a lot of weight. At first (having been a fairly chubby child!) I was quite pleased with my new slim-line figure and tried to ignore all of the other symptoms. My mother, however, had other ideas (as they say, mothers know best) and took me to the doctor. At first, my very helpful(!) GP suggested that I probably had an eating disorder, something which I knew not to be true, but the doctor didn’t seem to believe me.

After a few more months of pain and exhaustion, the first of my visible symptoms reared it’s (incredibly ugly) head. What appeared to be a golf ball sized boil started to grow on my bottom. After having been fobbed off by the doctor the first time, I really wasn’t keen to return, so I ignored it for as long as possible until I could no longer walk as I was in so much agony, and was forced to literally crawl to my Mum to ask for help.

We rushed to the doctor who took one look at the lump and phoned A&E. I could hear the big “C” word being thrown about and I was absolutely terrified. After being rushed through A&E I turned to my Mum and said that my WORST NIGHTMARE would be for a young, gorgeous doctor to examine me… Just at that moment, the curtain was pulled back and Dr Brad-Pitt-Lookalike walked in. As he asked me to drop my knickers, my jaw hit the ground and my Mum very helpfully started crying with laughter. One look at what turned out to be a peri-anal abscess and Dr Handsome sent me for surgery. It was a very scary time for me but sadly it didn’t end there. Following my surgery, the inflammation levels in my blood meant that I was very quickly diagnosed with Crohn’s Disease, something which I am now very grateful for as many patients suffer for years without a diagnosis.

Since that day, I have spent weeks (if not months) of my life in hospital having tests, treatments and surgeries. At age sixteen I had surgery to give me my first colostomy bag, a bag which sits on the outside of your body to collect ‘waste’, a great look I’m sure we can all agree. My Mum, ever the joker, liked to call me the bag-lady but my Dad, who really didn’t know how to deal with the upset of the situation, bought me my first Louis Vuitton handbag… He said that if I had to have a horrible bag, I should at least have a nice one too (so he is completely to blame for my designer handbag obsession… ahem…)

Despite being in and out of hospital for most of my GCSE and A Level years, I managed to get into Edinburgh University – definitely one of my proudest moments (and where I met Ruth). On the whole I managed to have a very normal student experience – drinking far too much, attending too few lectures and generally having a brilliant time. However, in my second year at university I had a huge flare up and was once again rushed to hospital. My bowel was close to perforating which could have killed me, and I was forced to have more surgery to remove my entire large intestine and leave me with a permanent ileostomy bag. It was an extremely sad day for me as the realisation that I would be a bag-lady for life really hit home.

However, after spending the first of two Christmases in hospital, just weeks after my surgery I was back at University and sneaking off for weekends to go skiing in Glencoe, after telling my Mum that I was going to see the historical site of the Glencoe Massacre, although I’m sure my parents and doctor were secretly pleased that I was feeling well enough to rebel against them!

Now
Now, aged twenty-seven, I am generally doing really well. I made a decision when I was first diagnosed at fourteen that Crohn’s was not going to beat me or stop me from following my dreams, no matter how difficult that can sometimes be. I finished my degree at Edinburgh whilst playing cricket, hockey, skiing and taking part in the Edinburgh Festival, I finished law school with a distinction (despite having yet more surgery just a couple of weeks before my exams), and I am now training to be a solicitor.

I inject myself twice weekly with a cocktail of drugs and have regular check-ups at the hospital but, thanks in no small part to the love and support of my incredible family, friends and boyfriend, I am really well and living life to the full!