Day 4 I write about my health because… Reflect on why you write about your health for 15-20 minutes without stopping. (15-20 minute purging of my disorganised and currently pestilence infested mind could be interesting)
The reason I blog about my health changes day-to-day and has definitely fluctuated over time. Initially it was definitely a very egocentric decision. I was out of work, sick as a dog, my life was a mess and I was under a wee bit of stress. Whilst, these days I am much more zen about the whole chronic illness business (well apart from the days I am sobbing into my pillow, cursing the universe and binging on mealy chocolate chips I found up the back of the fridge) initially I was a bit of mess. I know. Shocking right? Because I seem so cool calm and collected these days. Pinup girl for 'Keep Calm and Carry On' and all that.
But no, initially I felt voiceless. As cliche as it sounds, I really had lost me. Chronic illness can do that to you. It can drain you and beat you, until you know longer recognise the person you see in the mirror.
Writing has always been a big part of my life and should have been the natural progression in dealing with what I was facing. But I'd lost so much of myself, in the mire of doctors and tests and ill health, that I hadn't even considered writing as an option. Slowly, and with the encouragement of a fabulous social worker, I started writing once more.
I was very self-conscious about what I wrote. It was a secret. I wrote exactly what I was feeling. No censoring. I had the fear which I think many people experience, that if others saw exactly what I was feeling I would be judged. That they would see me as somehow less. But instead what I found when I shared my initial writing, was support and understanding. And perhaps most importantly, that I wasn't alone. To this day it remains one of my most popular posts, and the one people still email me about at least once a week.
With my blog I found my voice again. I realised it was possible to reach not only other patients, but those who weren't sick. I learnt that my experience is, the experience of not just those with Dysautonomia, but chronic illness in general. Theoretically I knew that from when I was still practising. But now it is a tangible thing and I finally realise the power of the written word to cut down barriers. To illuminate and educate. To create connection and help heal broken spirits. It's one of the ways that social media can truly rock.
One thing I do remember from my working days is that too often we keep thoughts, experiences and emotions to ourselves for fear others will see us as weak or crazy. Patients and their carers would come in and finally 'confess' their big dark secret, fear etched on their faces and screaming in their body language. And without fail it would be something I had heard a thousand times before, and was a completely normal reaction to an abnormal and stressful situation. To tell them that what they felt or experienced was normal brought such a relief. You could see the burden lifting before your eyes.
I think blogging openly about my health has that same result for many.
What we are told by our doctors is often clinical and depersonalised. "You have such and such a diagnosis". "You take these pills". "They may have these effects". "See you in 6 months". What they don't discuss is how not being able to attend your child's football match makes you feel. Or how the indignity of discussing your bowels to all and sundry can leave you feeling drained to your core. They don't tell you about the joy of vomiting in public. Or lying on the floor of a department store till your head stops spinning, and your vision comes back.
They don't tell you how illness feels. And I don't mean the physical sensations of being ill, although they often gloss over that (ie the classic "this will be uncomfortable", which is doctor speak for "it will hurt like hell"). I mean the emotional and psychological consequences of being ill. My bp numbers mean little in the big scheme of things. The fact that they leave me bent of the loo vomiting is what matters. That this will mean I can't go out to coffee with my best friend once more is what matters. That my social life is slowly decaying just like my body is what matters. These are the things that matter to those living with various chronic illnesses. And these are the things that are not often discussed.
For many, we go to speak about these issues and we are told, "to not give up", "to have hope", "at least it's not.....". Those who aren't sick mistake the voicing of the negative as somehow giving up. That we need to be fixed. That somehow our thoughts are wrong. When in reality we are just venting. We are not asking for solutions. Just a compassionate ear to listen. A moment of your time to say "gee that is shit".
Here on the blog it's my forum to discuss the undiscussable. I write it, put it out there and walk away. I don't have to listen to those who don't understand, and frankly I don't care to. And for those who do understand only too well, they know they are not alone. That at least one other person in the world gets it.
And if when I blog and I am sarcastic and snarky, and tell jokes about poo and mention all the unmentionables, and break all the rules, and that makes one person laugh, then it's all worth it. To make that next procedure or doctors visit more bearable. To bring a smile when life is so damn hard, makes every keystroke worth the often considerable effort it takes to create.
For me awareness and education are in many ways secondary to making the journey a little lighter for someone else.
That is why I blog about my health, the good, the bad and the downright ugly.
Every time I hear this it makes me think about running into my old pre-sick/pre-blog self.
Update: and I got a mention in the Week 1 HAWMC Roundup!