Bedside manner

It’s unusual for me to write an unplanned blog but today my fingers just needed to let loose on the keyboard to get out of my system the hate, hurt, anger and upset that’s  setting in. Even though I posted yesterday, I hope you don’t mind this unscheduled rant! It’s all too easy on social media to portray that life is peachy but sometimes we need to be honest because we can even trick ourselves into really believing the “I’m fine” business. Although that’s the path I’m happier to tread for the majority of the time, sometimes I find myself in a space that is so catastrophically not fine, that I can only be true to myself.

This blog is aimed at anyone in a job that holds any kind of human interaction whether that be face to face, via email or over the phone. It’s a blog to remind people that whoever you are interacting with, they are human. They have feelings. They may have their own problems that are hidden to you. I’m not particularly religious but at this moment in time, all I keep thinking is – treat others as you’d wish to be treated.

Earlier in the week I finally experienced my first decent phone-call with someone at the DWP. She didn’t talk to me as if I was a piece of dirt on her shoe, she didn’t judge me, she didn’t tut at me or make me hang up the phone and crumble into tears. At the end of the call I asked for her name and thanked her for allowing me to ask the questions I needed to without being made to feel belittled. Unfortunately, although she was pleased to be thanked, she said that it’s all too often she hears that from people and assured me that the position both she and her colleagues hold is not one of seniority, they are there to help and reassure people in order to ensure they get the help and benefits they need and are entitled to. How sad it’s taken four months for me to finally be treated this way.

And this leads me on to other experiences I faced this week. A letter arrived last weekend from the dermatology department, I’d had to reschedule an appointment in early January as it clashed with a neurology appointment but they had obviously overlooked that. Therefore this letter outlined the results of my skin biopsy and recent full blood tests. Luckily – well not really for me – most came back clear, but what if this hadn’t been the case? I would have found out via letter? And then I came to the last paragraph; a short, swift sentence saying they agreed with the diagnosis by my GP, that my ‘hair loss’ was linked to that and therefore they had referred me to a psychologist. I’m sorry, but had you forgotten that I am a human here? This is my life, my hair, my situation? And yet you are bluntly wiping your hands of me because, why? My case is complex and might take extra time and money? Why am I not worth that? But anyway, after another cry and feelings of deep sorrow and frustration, I dusted myself off, plastered on my “I’m fine” face and focussed on the fact I could discuss it on Thursday at my next appointment.

Fast forward to Thursday. It took a lot for me to get up to Kings for 9.30am yet ten o’clock rolls round and still we haven’t been called in so I approach the desk to enquire about how long the waiting time will be. It’s then that I am told the specialist I am due to see is on annual leave and the stand in Dr is not yet here and they can’t get hold of him. I’m sorry but, why were we not a) informed she was on leave prior to today or b) told when we arrived that this was the case? It doesn’t take a lot at the moment to make me cry because although I manage to keep it in most of the time, I feel like I’m constantly on the edge. So there I am walking back to my parents in a full waiting room, crying. All because my doctor isn’t there – stupid but it tipped me over the edge. Does no one actually care about me? I had a text the day before my appointment reminding me that a missed appointment costs the NHS £160 but hey, if a patient is stood up, never mind, come back another time right? No harm done!

To be fair, the receptionists were amazing and it really wasn’t their fault. After they did some calling around we were told the stand in Dr had been on nights and had apparently cancelled his day appointments but the message hadn’t got through. The next available appointment would be March. But at that point, eagle-eyed mum saw the senior dermatologist come in and asked the receptionist if she could see if he would see us. Long and short is, fair enough, he did. But I wish in many ways he hadn’t.

He is the lead specialist in the dermatology department so you would hope that his bedside manner was outstanding eh? I understand and give some leeway to the fact he wasn’t expecting to see me but that doesn’t excuse the next ten minutes in my eyes. He didn’t have any notes so was obviously working from memory from their meeting after the case conference but he proceeded to tell me that actually their diagnosis was that my hair loss was more than likely untreatable and incurable. Bang, just like that. I cried and he just commented, “no tissues – sorry, NHS.” No worries that I’ve just told a 30-year-old girl that her hair may never grow back, no biggie, you can cope with that.

After I gathered myself I managed to question him, I was angry and in all honestly did not trust what he was saying. In the letter I received, statements had been made about other things which he then did explain to some extent but also tried to wiggle out of. He also stated that dermatology don’t really know much about hair loss and alopecia, he shrugged his shoulders a lot and leant so far back on his wheely chair, at one point I cruelly wished he’d keep going so it toppled over. He was abrupt, insensitive and uncaring, I was so stunned and shocked and felt harmed by someone I didn’t really know. He did explain why the psychologist had been suggested, if I deal with any stress internally then my body may start to heal from the inside which in turn will help the outside – or something like that, I must admit I had started to zone out a little by this stage. I asked him why I had follicles that weren’t growing – he responded with, “pffff, we don’t really know.” Mum pushed him to say that his referral meant that there was still some hope to which he said yes, but in all honesty, by this point I didn’t believe much that was coming out of his mouth.

After that appointment I reacted in a way I hadn’t before. I didn’t want to talk, I didn’t want to be around anyone, I didn’t want to ‘be’ really. In that instance I felt I had no fight left, nothing, zilch, I felt done. I wanted to run away, not have to face any of it anymore, I felt like I had reached crisis point and all because of the way that a specialist of the NHS had spoken to and treated me.

He is going to refer me to a specific hair loss dermatologist at Guy’s which I will go to and I will attend the first psychologist appointment but after a restless night and thoughtful morning I have come to a conclusion. I do not need to be cured in terms of my hair. My lack of hair is not offensive contrary to some socially inept people, it doesn’t make me any less worthy of love or affection. Like I’ve said before, I miss my hair every single day and I hate the person that stares back at me just as much as the day I shaved my head. But the conclusion I’m coming to is that maybe that’s because I haven’t allowed myself to accept it because I’ve constantly been looking for a cure. I’ve seen my hair loss as something disgusting and something wrong with me. But actually, I don’t need to be cured. I don’t have hair. I’m HairlessHannah, baldblogger. This is me now and hair doesn’t define me, I don’t need a cure. It’s not disgusting, okay it’s not something we see often but it’s not harmful to me or to others. That thought is actually quite freeing, I’ve never considered it that way before.

The rest of what I’m going through DOES need a cure. I cannot live the rest of my life in pain, with constant fatigue, noise and light sensitivity,  in isolation, not driving, socialising, working, earning. I cannot live with pins and needles from the neck up for the rest of my life. All of that needs a cure. Not management, a cure. And if a cure for that is found then MAYBE my hair will grow but MAYBE it won’t. If the rest of it is cured, I will be able to wear hats and wigs if I so choose, I can wear make-up and jewellery. I can make myself feel more feminine again but my hair doesn’t need curing.

So, I will see this other guy, I will try out the psychologist incase it will help with my illness but apart from that, hair wise I’m done. I’m done with trying different treatments, herbal remedies, seeing different “specialists” because I simply don’t need their lack of bedside manner. I am taking back the control again. I don’t need their opinions. The only opinion needed in terms of my hair, is my own. So from now on, I am bald, I have alopecia and I am proud. My hair may grow back one day but it also may not and I need to start  accepting that. And as I cry whilst I type this, I know that this is the first step towards starting to love myself again which, as my dear friend told me during our reiki session this week, I need to be able to do that again because it’s actually more important than we realise. Hate in any form isn’t healthy so self hate can’t be doing me or my recovery any good.

As a teacher, no, as a HUMAN,  I always strive to treat every child, every parent, every person I come into contact with, with the utmost respect, care and kindness. I imagine how I would feel if I was receiving the news being delivered to me. I go out of my way to help people and to make sure they know how much I am investing in them. I know the NHS is under great strain at the moment but if the bedside manner isn’t there, that’s when patients start to lose faith. That’s when patients walk away from any potential help that could be available. That’s when the system fails us.

So regardless of your job, just remember that your job as a human is to treat people how you would want to be treated. Everyone is fighting something on a daily basis so be kind, be mindful and think before you speak.

Have a lovely weekend.

#hairlesshannah