So, one of the first life decisions I made on my road to being diagnosed with Fibromyalgia was to begin writing a blog, the original sister blog to this one Living Creatively with Fibro. I have carefully used the expression my road, rather than the road because everyone’s journey is different. Although some fundamental things are the same for everyone. In this post, I wish to put forward the case that blogging is good for spoonies.
Getting to a Diagnosis
There is much derision made of Dr Google and up to a point I can understand this. Simply putting your symptoms into Google and jumping to a conclusion is not a good idea. Let’s face it every illness, syndrome or condition is simply made of a set of symptoms. It could be very easy to scare yourself into thinking you have the worse case scenario or equally dismiss something that does need medical attention.
Working with the Doctor
Having said all that, doing your own research while working along side your doctor is actually rather sensible. Once the Doctor had done a whole gamut of tests and ruled out the nasty diseases, it was then down to building a picture of my symptoms. Working out what symptoms are part of your condition and what may be a comorbid one. As I was working things out at my end I was regularly coming across blogs written by spoonies.
A wealth of knowledge
I found these blogs to be a wealth of knowledge. The official websites like the NHS one have a very limiting overview of Fibromyalgia and other similar conditions. One reason blogging is good for spoonies is that the blogs help people who are on the journey to diagnosis to better understand the condition.
Before I was on my road to diagnosis, you can find out about my journey in this post. I had heard of Fibromyalgia only once, and to be honest didn’t really understand it or take it in. It is, I believe, one of the weaker human traits that we can have a tendency to reference things to our own experience. So, another reason why blogging is good for spoonies is to help raise awareness of conditions that are not well known.
Learning Lessons from AIDS
First and foremost I am not in any way comparing AIDS with Fibromyalgia or the experiences of people living with the conditions. What I am talking about is the understanding of the general public. I (as far as I am aware) do not know anybody effected by HIV or AIDS. But I do have a broad spectrum, basic understanding of them thanks to volume of work that has been done over many years, most notably for me by Princess Diana.
Looking for a Cheerleader
There are a few people in public life who are living with chronic illnesses, to my knowledge Lady Gaga and Morgan Freeman and the most famous. However, although they may occasionally reference the condition they are no official spokespeople. That is their right, although it does sadden me that they have such a vast platform and don’t choose to make the most of it. I understand though that celebrity status and chronic illness do not mix well. Disability, yes, much work has again been done around disability awareness.
Becoming the Cheerleaders
At a grassroots level, as spoonies, we can all be our own cheerleaders and raise awareness. Many people do this on social media channels which is great, but as is frequently pointed out, the platforms can change at any time and people’s content can be removed for any reason. Therefore blogging is good for spoonies because when you have a blog (with your own domain name and hosting) you own your content and therefore you are in control.
My next reason blogging is good for spoonies is that it creates a community. I am part of the Fibro Blogger Directory and together with the associated Fibro Connect Facebook group where we discuss living with Fibromyalgia (as well as the private group for the bloggers where we discuss, you’ve guessed it, blogging), we have a really helpful network. When a chronic illness takes over your life it is so easy to lose or dilute social connections that were built upon face to face contact.
Blogging to manage Fibromyalgia
Stay with me, I can understand that this may sound a little controversial, writing a blog is hardly a treatment plan you would think… However, this is a real reason blogging is good for spoonies. In two different ways no less.
First, when you write about living with Fibromyalgia you need to do some research. The amount you do depends upon the content you wish to produce. Even if you are mainly writing from your personal perspective you need to have a bit of a nosy around the web, even if it is only to find some suitable websites to link to. Through even the most casual of research habits you learn new information and stumble upon ideas to try.
Blogging as Therapy
I can’t vouch for this for everyone. But, from my experience the act of creating and developing my blog has been a form of therapy in itself. As Fibromyalgia forced me to give up first all my out of the house extra-curricular activities and then my occupation. Blogging has given me purpose. One of the worst things a chronic illness can do is creep into your soul and make you loose your sense of self worth, triggering depression. Blogging stopped this happening to me.
Why blogging is good for spoonies
So to sum up, here are all my reasons why I believe blogging is good for spoonies.
- Providing information for those who have newly developed the condition.
- Raising awareness about chronic illnesses one social group at a time.
- Providing a social network of people who understand what you are going through.
- Keeping you up to date through your own research.
- Giving you a sense of purpose if you have had to give up your day job.
Coming soon on the blog
If you have read this and you think you might like to give blogging a go, you will be pleased to hear that this is the first post in a whole blogging series. Bit by bit I am going to talk you through all my best (and worst) decisions so you can learn from my mistakes and hit the ground running.
Sharing is Caring
If you have found this blog post helpful in any way I would really appreciate you sharing it on whatever social platform you like best, so that other people can see it and benefit. Speaking of Social media have you read my Instagram for Spoonie Bloggers post, I think you might like it.