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The diagnosis

I am a frequent visitor to my GP due to other female specific health issues I have. So the thought of having to disclose yet another personal condition was not something I wanted to do. My reasoning was always that if I saw someone now then I could prevent the condition getting any worse. I visited my GP and with a lump in my throat and sweaty palms I removed the headwear that i had recently started to wear. This was the first time anyone had ever seen my natural hair besides my partner and I felt sick at the thought this was happening. My GP was a female, as I had specifically requested this at the time of booking in the hope she may be more sympathetic to what she was about to see.

On entrance to the consultation room she made me feel welcome and proceeded to ask how she could help. I sat down and began explaining the process of my “realisation”. She listened attentively and once I had finished she asked to see my hair. I felt scared at removing my headwear, that sick feeling came back and I nervously removed my headwear to reveal my patchy scalp. Thankfully her face did not appear to look disgusted and after giving permission for her to begin the examination she was standing in front of me. Within minutes she had touched and viewed my scalp using her gloved fingers and a magnifier. “I dont really want to give a diagnosis as it could be a specific dermatological condition that I am unsure of.” This was not what I wanted to hear especially after I realised I would need to do this all over again as she recommended I be referred to a senior male GP who specialised in dermatology. On leaving her office I realised this was going to be a much longer process than I could ever have imagined.

The next few years saw a series of visits to the GP as either 3 or 4 monthly appointments were issued each time. I was prescribed a number of different tablets and topical ointments some of which exacerbated the itching or had no effect at all. The constant use of different medications and their lack of effectiveness at reducing my hair loss and flair ups of irritable skin, began to take its toll on me. I knocked on the door years later and the doctor asked how I was doing. I just want the itching and hair loss to stop. The GP stated again that my hair loss was probably due to the tight hair plaits and weaves I had been putting in my hair at which point I felt a wave of anger come over me. I was sick of hearing the same thing over again especially as I knew this was not the reason my hair was falling out. The anger then subsided and I felt helpless as the tears rolled down my face and I began to sob. He promptly offered me a tissue and a referral to see the consultant dermatologist. Who knew all I had to do was breakdown to get the referral that I desperately needed.

6 months later I attended my first appointment a little more hopeful I would get a diagnosis but with significantly less hair than I had st the start of my journey. By now I had to resort to wearing wigs to hide the loss of hair I had and the irritability of the wig on my skin was a daily occurrence. On examination with the consultant i felt much more at ease and answered all the questions asked swiftly. It was much more thorough and over the next few months i was given medication to reduce my skin irritability, had medical imaging photos taken and been given an appointment to have a scalp biopsy taken. I really feel that this was the changing of my mindset and on the day of my biopsy results I felt a huge sense of relief as I was given a pack of information about lichen planopilaris. At last a diagnosis, it this was bittersweet itself as all I heard in the next sentence was “we can treat the symptoms but the hair loss is scarring and therefore, permanent “.

The tears were back and I was sobbing once more.

The support

In October 2016 I decided I needed to find out as much as I could about my condition and surfed the internet googling as much as I could about lichen planopilaris. I stumbled upon the British Association of Dermatologists and read all the info I found. It did not tell me however as I was unsure if this was common or who else I could seek help from. I then began visiting many sites on alopecia of any kind to try and see how many other people may have this condition and how did they cope with it? I felt surprisingly alone as no one else I knew would ever understand how difficult coping with this condition had become. I knew I needed to talk to someone but my GP was never going to be the place to find this help after my previous meetings and conversations had. I thank the day I stumbled across the alopecia uk website and I used this site to fill in any queries I still had, utilising the wealth of information available here. A few weeks later I began reading about the support groups that were held in various cities in the UK and hoped there would be one I could attend nearby. Luckily there was a meeting coming up the following week in Birmingham. I decided I needed to go.

I emailed Marie the same day introducing myself and asking if I could attend. The initial contact was like a weight lifting from my shoulders and my request was well received. I could not wait for the week to go by and I was anxious but hopeful. All week I kept reading my email over again to make sure I knew where I was going and planned the train to make sure I had time to get a coffee and find the venue, not that I could ever lose my way in grand central station. Saturday morning finally arrived and I suddenly felt sick with worry. My ever supportive partner offered to come with me but I declined. I knew this was something I needed to do myself to make sense of it all. I arrived without a hitch and walked into the meeting space to some very friendly smiling faces. Instantly feeling at ease. Marie was personable, welcoming and totally bald! Wow how brave and strong, I thought to myself. I wished I had her confidence and acceptance as only hours previous I was coming, brushing and styling my wig to ensure no one could tell my hair was falling out. I completed the new member forms and sat waiting patiently for the meeting to start. Frequently sipping on my very strong coffee trying to hide my nerves and lubricate my dry mouth.

As the meeting started we were asked to introduce ourselves and say a little about our hair loss. I sat and listened to the journeys of others attending which made me feel warm and hopeful for the first time. Not because I thought my condition would improve, or get better, or even be cured but because I had met other people who understood me and my feelings having been through it or had a similar condition which they were currently going through. I met some fabulous inspirational people that morning, one of whom started her own journey of self discovery for the first time also on that day. I would love to share their stories but the truth is it’s not the individual stories that help but the fact we are all there together with a collective experience and understanding of the trials and difficulties alopecia presents. 3 years on I am writing about these experiences as I can now make sense of the process I have been through. I truly believe Marie and Alopcia UK helped to pull me back from the depths of a depression that I was lucky to recognise. The work these volunteers do is outstanding and the people who attend and share their journeys is way more valuable than any medication, treatment or wigs the NHS could provide.

The grief

I am only able to discuss this post today because of a revelation I had during my support group meeting yesterday. There is very much a rollercoaster of emotions that happen in anyone’s journey of hair loss. Each being very personal to that person with no right or wrong in terms of what you should feel and when. Speaking out about this now is because I can see how and why there are varying degrees of emotional stress with can lead to some people being depressed, or at its worst still suicidal. This condition can be cruel and I have seen and heard first hand how people can find themselves in a downward spiral leading to isolation, seclusion, and ultimately on a path of self destruction. With this in mind the awareness of alopecia is vital within the healthcare profession not just for the physical effects but also for the psychological effects the physical differences seen can cause of sufferers.

Having said all of the above I have always seen myself as someone with a strong and confident personality. I dont often feel like I cannot cope and I like to manage situations on my own. It’s only looking back on the condition now as it slowly presented itself I realise the changes in my mental health. It didn’t help that I also had another medical condition that was quite severe at the same time. Constantly hiding my hair and attending appointments for another medical problem was very tiring and mentally draining. It’s not always possible to remain positive and the daily grind of my job as a teacher really took its toll. My partner regularly used to comment on my mood and more noticeably my snappy intolerant attitude that had begun to emerge. A strange out of body experience would describe it as a total lack of patience to the slightest thing. To me I felt I had used up all my patience at work with the students and when I came home I just released all my pent up frustrations on those closest to me.

My temperament has changed since my diagnosis but I still have moments where I fly off the handle for minor reasons. My hair is part of me, it’s my identity. I was never a person who treated their hair as well as I should have. With Afro Caribbean hair it needs regular treatments and attention so I couldn’t help thinking this was my fault and I somehow deserved this. I never realised until yesterday at my support group that we are all suffering from grief. This became apparent as I looked at how broken one of the new members was and right then looking at her I saw myself a few years ago once when he said “it will never grow back” and again when my mother told me my grandmother had died. Two very different situations but grief nonetheless. Its personal loss of different magnitudes but there is always a constant reminder with hair loss. Its everyday, with every glance in the mirror or photograph of memories. So I take comfort in music on occasion and in the words of India Arie “I am not my hair, I am not your expectations “.

The shave

In October 2016 the month of my diagnosis I did what everyone does with a new medical condition and googled everything I could about lichen planopilaris and alopecia. Whilst doing this stumbled across the alopecia uk website and began reading everything I could. After much consideration and family discussion I decided to along to the local support group. I emailed a lovely woman called Marie and told me to come along to the meeting with some reassuring words. The day of the meeting I was really nervous and put my wig on a normal to attend. When I arrived the meeting room was full of people chatting and drinking tea. I was welcomed from the start and instantly felt at home looking around at the people who were all in various stages of their own personal journeys. Some with bald, patchy hair loss, wearing wigs or headwear. I met some fabulous people and instantly felt at ease, I listened and conversed with others about my fears. The weight was lifted because I knew they understood the way others never would. I felt at peace almost like my sanity returned as my feelings were heard, recognised and healed. I attended every meeting over the next year and learnt some valuable lessons in acceptance.

I had never imagined having short hair. That’s for boys. I was looking in the bathroom mirror and my partner leaned in behind me. “Are you worried? “he asked, putting his arms around me. “I think it will be fine you will look great”. He placed his hands on my forehead and held back the remaining hair so it was as flat as he could to my scalp. On tilting my head back it looked as if I my hair had been shaved off and a shock feeling of reality swept over me. I’m going to have no hair and it’s going to look awful! On reflection I’m glad for the support and reality check I was given by my partner that morning as over the coming months I began to accept the little hair I had at the front of my scalp did not look right.

July 2017 I kept my usual appointment at my local salon for my ‘holiday nails ‘ and waxing. As you know all manor of things are discussed in a salon and my beautician, Zoe, regularly gets an insight into the ups and downs of my life. I told her about my hair loss and in the same sentence said ‘I think I need to shave it off’. It came from no where but the thought of going on holiday to Crete with a wig on top of all this patchy hair was making me sweat. Lucky to have have supportive friends I heard Sandra, the hairdresser shout across from the back room ‘you would look lovely, I could do it for you’. Before I left that day I had an appointment for my shave and a promise that she could do it in the privacy of another room if I wanted.

The day arrived and as usual I went to the salon in my favourite wig. I sat in the chair having decided to do it in the main salon area in front of everyone. I nervously removed my wig out in public for the first time. I took my cap off and pulled my plaits with my hands for the last time. ‘Are you okay?”she asked. I nodded unsure at first. She cut the first plait and as it fell to the floor another strange feeling occured. Not just acceptance but a sense and feeling of control being restored. As my hair fell and the shaver was turned it felt good to finally have taken control back from this condition and of myself. That day I couldn’t brave the clean shave I needed but I felt better mentally as I now controlled the way I looked once more.

The realisation

They sometimes say the severe shock or stress of a major event can make you ill in a number of ways. I’m not sure if this is entirely true but 11 years ago I had a major relationship break up. It left me at rock bottom which by my standards means feeling depressed, unsure of my instincts and lacking confidence. Being quite a mentally strong person I had a few verbal battles with myself. It’s hard to explain but I knew I had to try harder and work harder to get what I wanted out of my life. Within a few months I was making progress at work, eating healthier, and socialising with friends. I also met a great bloke who helped me, along with my family to overcome this difficult time.

I’m not fully sure when my hair loss occurred but I suspect this period of my life was the trigger. I always wore my hair in braids and had my hair plaited using human hair extensions for years. Everytime I took them out and washed and treated my hair my mother always used to say “make sure you give your hair a break from extensions so that it can recover”. Even back then in my 20’s I never used to like being seen without them.

A few years into my new role at work I began to notice that the extensions at the front of my hair would keep coming out and when I did not have them in there was not much to comb. My hair felt and looked thinner. I then decided to see a hair specialist for wigs and weaves. She was very good and gave a thorough consultation she advised that I keep photos of my hair to monitor my scalp. Even at this early stage she recommended that i see my GP but I chose to go along with some of her suggestions for covering it up. I had found a new way to disguise it in the form of a weave which I had never had before. I went regularly over the next few years, making the one hour drive from Birmingham to Leicester each time. Every time I removed the weaves I kept fooling myself that my hair was okay when in reality it was getting quite severe. The photos I took religiously but did not really see much difference each time as I only ever compared them to the last time I did it. Eventually my hairdresser stated that in order to continue to have a weave she would need to construct a false scalp made of a mesh across the front of my head to give her something to stitch the hair to! I still told no one and agreed to it regardless. I left the salon looking as I always did, like a lady with no worries and a fully styled head of hair.

Two months later I was due to return to have my weave done again. When I took them out and tried to wash my hair I felt like lots of hair was coming out into the bath. I rang my hairdresser and asked her if she could help me style my natural hair without a weave as I had the realisation there was not enough hair there to twist it as I would normally. The next visit to the salon saw me leave and using my phone I took pictures of my hair from above. What I saw made me cry in the toilets of the salon and I realised I needed to do something before I lost all of my hair.

Me

I am a middle aged woman and 11 years ago I found a small bald patch the size of a five pence piece on my scalp. It was accompanied by broken skin which developed into a sore. I put this down to a scratch or spot that had gone a little bad and forgot about it as it healed. Over the next 8 years the hair at the front of my hair began to get thinner and thinner and unbeknown to me I was in fact inventing ways to cover this up. First of all with plaits and then with weaves. Once I started I could not stop and never wanted to be seen without my weave in. My mom always worried that my hair needed a break but I refused to listen not wanting anyone to see it. I dont know why I feel ready to share my journey I just know that awareness is key and support leads to acceptance which for me is life changing.

I want to show how far I have come since my diagnosis 3 years ago. I would not have dreamt of letting anyone know or even go out in public bald. I hope to talk about the rest of my journey through dealing with hair loss and how situations have affected me. I want to show how to embrace hair loss and make the most of opportunities when they arise.

Follow me through the journey and tune in weekly for my updates.

#zerotohero #baldwarrior #alopeciaawareness #hairloss #baldisbeautiful #alopecia

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