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The reality behind the photo

It’s been a while since I wrote about how I’m coping with having an invisible illness. I’ve now been formally diagnosed with ME/CFS which was both a relief and a worry. A relief because I can now answer questions definitively about what is “wrong” but also a fear because part of me really didn’t want it to be ME. I wanted it to be something curable, treatable…for someone to be able to ‘fix’ me.

I’ve been using social media much more to promote my blog lately and as we all know, social media portrays an image of people that doesn’t always reflect the honesty of your reality. Some people that I follow who have ME are truly brave and use their accounts to show the reality of daily life living with ME, but I don’t. I guess I don’t because I try to keep as many aspects of my life positive and happy in order to keep myself as pepped up as possible. There is nothing wrong with either but my option does then cause problems. By posting a photo that shows me out, smiling, laughing, with people, posting positive etc etc it would appear there’s nothing wrong with me. I’m not opposed to the odd selfie but I also don’t always feel comfortable to show reality through them, my space for being honest is here in my writing.

But what I want to write about in this post is the story behind the social media photos. Photos give you a snap shot. Take for example the photo below.

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This was taken on Friday evening at a surprise party for my ex head teacher and friend. I was picked up at 7pm…well 6.45 as Olivia was EARLY!…the party started at 8pm and my Dad picked me up at 9.30. In the photo I am laughing, surrounded by some of my loveliest friends, drink in hand, having a ball. And I was. In that moment I was happy, I was with people who accept me for who I am, support me through what I’m going through and understand my limitations. To many people though they will see this photo and possibly think the following:

  • Hannah is out, she tells us she’s in bed by 9pm
  • Hannah is dressed up and out at night when she tells us she struggles with noise and busy places
  • Hannah tells us she is in constant pain and can’t do very much let alone go out with friends

Now, I will tell you the reality behind that photo. I haven’t been out in the evening in a party situation since July last year and on very few occasions have been out for a meal in the evenings, so Friday was a big deal. I was anxious about going and I spent most of the afternoon trying to nap to have enough spoons to cope and calming myself down in anticipation. When we arrived it was much louder than I’d imagined it would be. I put my ear plugs in straight away but soon realised that because it was so loud, music plus ear plugs meant I couldn’t hear a word anyone was saying! So I spent the entirety of the few hours I was there with an increasingly banging headache and fuzzy head. I loved those few hours, but I also felt so self-conscious. I was literally the only bald person in the room, I felt like the light was catching my head or that people were staring at me and I certainly didn’t want to be in any photos. I felt hideous, I didn’t feel feminine, I felt ugly and awful and the worst I’ve ever felt about myself. So that photo was me putting on the biggest show of my life in a way – I was happy but would have been happier to not have been captured in that moment. By the time Dad collected me I was done. My legs, knees and back were throbbing, my ears were ringing to the extent I felt like I was shouting when talking to him in the car on the way home and my head was pounding. As I lay in bed that night it was like I was drunk (I only had diet coke!) my head was whirring, my legs cramping and having spasms, my knees seizing. I finally fell asleep at around 8am. That is the reality behind what it took for me to be at that party for two and a half hours.

I’m 31 in a few weeks. I should have been there with my friends on Friday until 1am dancing, drinking a Malibu and coke and being the one snapping the photos like I have always been known to do. I should be looking back on my 30th year and have it littered with good memories of adventures, holidays, milestones and happy times. Instead, it’s a year of appointments, medications, blood tests and sleep. Of course I have had happy times in the year but I think you know what I mean. I feel like a shadow of my former self and I find myself needing to defend how I feel because of photos like the one I’ve talked about. I refuse to not post those photos because otherwise I will not have any memory of these years, in effect I will be missing from these years of my life. There’s a campaign called ‘Millions Missing’ that promotes ME. It talks about how people who have ME are missing from their jobs, social lives, holidays, families..we can’t participate in life in the way we used to but we are still here, we still make the most of what we can when we can. Last year they organised a protest in Whitehall and various other places across the world where people left pairs of shoes to demonstrate how they were missing from their lives because of ME and protesting for the fact that more needs to be done in terms of research and greater funding needed from the government to help people understand the illness more and treat it and it’s sufferers better and with more care and consideration.

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I have been talking to a dear friend this afternoon about this but also about mental health and the similarities that we share. Mental health is also an invisible illness. Just because we had a good day or hour or five minutes yesterday, doesn’t mean we will today or tomorrow or next week. Mental health and ME are fluctuating conditions with no rhyme or reason, no straight path or definitive ending. They are illnesses that need understanding and for people to simply say, “I believe you.”

I find it hard when I see people who say, “You’re looking so well,” or “You’re looking so much better than when I saw you last,” because it makes me feel like a fraud. I feel like I need to defend myself and explain that it’s a hidden illness and looks can be deceiving. If I could wear a wig and pop on some make up I would look totally and utterly fine but I’m not. I feel embarrassed to have to then explain that I’m not actually feeling great but, “thank you for saying I’m looking good.” I know whole heartily that these people are probably being really genuine and kind –  it’s my issue not there’s, I should be thrilled to be told I’m looking well. But because of my personality, I worry that they think I’ve been having them on. My positive attitude and positive mask can work against me in that way because people come to believe it and don’t question it. I saw a friend the other day and we talked about how I am, the loss of my nose hair (!) and everything else in-between but when I saw her again on Friday night she said something that made me smile from inside out. She said that when she got in the car to drive away the other day, she thought about me and what we’d talked about but then she wanted me to know she thought, Hannah is still the same as she’s always been to me. Wicked sense of humour, same old laugh and smile and sense of caring for everyone. To hear that being said so genuinely meant so much, it wasn’t focused on how I looked, or all the changes in me that have occurred, it was a comment about me as Hannah.

Living with an invisible illness is teaching me so much and I’m sure there’s more to come. It’s such a debilitating condition that is stripping me of so much of what I consider my identity. And there’s no end in sight especially when the only recommended “treatment” of a course of CBT is a waiting period of 4-6 months! So, I will continue to try to test different ways to cope and pace myself, I will deal with the ups and downs, I will continue to try and like myself and my appearance, I will try and start to accept that I can’t drive or have much independence and I will continue to strive to stay positive.

It’s a lonely place in this little arena, my bedroom and little writing area are my safe place but they are also lonely. It accentuates the fact that I’m not in a busy classroom or planning for nights and days or even weekends out. But it means that when I do see my friends or I do go out with my family that I don’t take it for granted. I savour every moment even though it may hurt and will inevitably wipe me out for hours, days or nights after. Because at the end of the day, whether I like it or not, this is my life and I will still only get one shot at it. If and when I get better there won’t be a rewind button.

So as with so many of these blog posts, I leave you with this thought: many people you know or will meet may have so much going on in their lives that isn’t visible to you. So be kind and patient and understanding. Give them time, give them a smile and possibly some chocolate…every little helps!!

See you Friday.

#hairlesshannah

 

13 Reasons Why – my review

’13 Reasons Why’ came to my attention via social media. Twitter seemed full of it and that intrigued me because there was a clear divide of opinions. So it became my next Netflix watch and now that I have finished it, I also feel very torn. I haven’t fully digested it all and taken time to sit and think about how it’s made me feel hence why I am just sitting and typing and hoping that by writing about it, I will get rid of the feeling of unease it has left me with.

The premiss of the show is that a high school girl named Hannah Baker commits suicide but before doing so, she leaves tapes explaining the reasons why she has done so.  We are told the story through the character of Clay who struggles with the idea of listening to the tapes and it takes him an age to get through them because he feels so uncomfortable about Hannah’s story as it unfolds and hampers his coming to terms with her death.  This is something I felt I had in common with Clay – it wasn’t a series I felt I wanted to binge because each episode revealed a reason why this 17-year-old killed herself and that didn’t sit well with me. I needed to digest each episode and the issues it brought to the forefront.

Suicide is something I don’t have any experience of. Yes, dark thoughts have been a real issue for me of late but not to that extent. Yes, I’m taking anti depressants but not for the reason of suicide. Yet watching this programme, it portrays just how easily impressionable, vulnerable teens can be led to that state of mind where there seems like no way out. There’s nowhere left to turn, the feeling of emptiness is overwhelming to the point of no return. The show, in my opinion, is very well acted. It’s sewn together faultlessly to show the web of teenage life and how simple acts can lead onto bigger issues. We have to take care of the words that leave our mouths because we don’t know what other people are going through. When I was little the rhyme, “sticks and stones may break my bones but words can never hurt me” were relayed a few times but actually, that is so far from the truth. We don’t know what struggles people have or what their emotional state is. Simple, harmful, throw away words that leave our mouths in a matter of seconds can stick to the recipient for hours, days, months…years even and make a chink in their armour that is irreparable.

Every year as a teacher I have done a simple PSHE activity about how words can hurt each other and how we can’t take them back. The children start in small groups with a paper plate, a tube of toothpaste and some cocktail sticks. They love the activity – getting to squeeze out every last drop on the toothpaste onto the plate. And then when I ask them to replace ALL of the paste back into the tubes using only the cocktail sticks, it’s fun to watch their little faces, full of concentration and determination which soon turn into frustration and sadness when they realise they can’t do it. This is when I get them to imagine the tube of toothpaste is their mouth and the squeezing out of the paste are their words. The reality of it is we can’t get that toothpaste back in the tube, just like we cannot take back and erase the words we speak, once they are out the damage is done. A simple yet effective activity that I love and will always use.

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One of the reasons I wasn’t sure about the show was because a massive part of me agrees with some of the twitter comments about how this programme could be a trigger for those who are dealing with suicidal thoughts and who have dealt with/are dealing with abuse. ‘Stranger Things’ actress Shannon Purser tweeted:  “I would advise against watching 13 Reasons Why if you currently struggle with suicidal thoughts or self harm/have undergone sexual assault. There are some very graphic scenes in there that could easily trigger painful memories and feelings. Please protect yourselves.”  And I wholeheartedly agree.

But this doesn’t mean others shouldn’t watch. The shows main message for me is how many people miss Hannah. How much people around her care for her and love her, value her and miss her. It shows what she is now not a part of and will never be able to be again. It gives the message that if you are in this dark place to stop and look around, really look around and look for the goodness in your life – people, things, experiences and put your reason for living into them. Find reasons to live not reasons not to. Although I also know this is much much easier said than done.

It highlights the fact that we need to speak up about issues of mental health and abuse – it tackles rape and suicide very graphically. This is another part I still struggle with, probably because they are the scenes that stay with you because they are so graphic. I don’t know whether that is absolutely necessary because both issues are dealt with so well through the script but I see why they were included. It’s the rawness, the total open honesty of the show that hasn’t been done before to my knowledge – it tackles these issues in full view for us to see. So yes it is horrific, uncomfortable, upsetting viewing but it is needed in order to tell Hannah’s full story, for us to understand what she went through and to understand what led her to her ultimate death. And through that we can see how the people around her are led to realise how they played a part in it all – demonstrating again how delicate and thoughtful we should be to our friends, colleagues, acquaintances…people we pass on the street. The shows writer has responded to criticism about these scenes and why they were included and when I read them I understood the importance of their inclusion:

“It overwhelmingly seems to me that the most irresponsible thing we could’ve done would have been not to show the death at all. In AA, they call it playing the tape: encouraging alcoholics to really think through in detail the exact sequence of events that will occur after relapse. It’s the same thing with suicide. To play the tape through is to see the ultimate reality that suicide is not a relief at all – it’s a screaming, agonising, horror. We wanted to tell that story truthfully. And as difficult as it is to watch, it should be difficult to watch. If we make it easy to watch, then we’re selling goods that we didn’t want to sell.”

It’s okay to not be okay, but don’t be not okay alone. Friends and family are there through good, bad and ugly and to support and help you. And if you don’t feel you have friends or family that can do that, there are helplines and organisations who are. Suicide should never be the only option left for any human being.

Samaritans: 116 123

Papyrus (supporting teens and young adults with suicidal thoughts): 0800 068 4141 

Rape crisis: 0800 802 9999

Victim support: 0808 168 9111

I’m not going to recommend this show, not because I don’t think people should watch it, I do. But it’s a show people need to decide whether to watch or not on their own. It is an 18 certificate for a reason.

Sorry for the heaviness of this blog but the show just brought up a lot of thoughts about issues I hadn’t ever really truly considered before and I wanted to get it out there because they shouldn’t be taboo subjects, they need to be talked about so people don’t feel so alone. If anything, the show has brought these issues to the forefront, and whether you agree with it or not, people are talking about it and that equals awareness and that can never be a bad thing.

This has been a tough blog for me to write because I know there will be some people who have watched the show/have opinions on it who will agree with my thoughts but there will be some who really oppose them – let’s just remember the premise of the show here and not leave any nasty comments – everyone is entitled to an opinion and discussions are welcomed but only if they are kept nice and peoples own thoughts aren’t judged.

#hairlesshannah