A Writer? Seriously?

This is something I hear regularly. More so from myself than other people funnily enough. It’s that doubt, that voice from childhood wriggling in your brain: ‘Writing? You mean like a journalist? You wouldn’t like that.’ ‘No, I mean writing as in stories, books. It’s a real job.’ ‘It’s a real job for other people though, it’s far too uncertain to be something you’d want to go into. It’s almost as bad as acting or music! What you want is a good steady profession like accounting or computing or teaching. Become a laboratory assistant, just don’t try to be a writer!’ (I wasn’t actually told I couldn’t be anything, I was just unknowingly steered toward certain things and away from others.)

Trouble is I am a writer. I wake up in the morning and the first thing I think about is probably writing – what am I working on at the moment, have I solved that problem, oh heck I’ve finished something, that means I’m on editing! During the day I can sit typing for hours without noticing. Before I go to sleep the characters whisper–

Yes, I’m a crazy person too. I hear voices. My characters often refuse to do things that are out of character or a bit iffy, ask if we can please get on with the story, and demand to know how I’m going to get them out of the situation I’ve stuck us in. It’s a common enough complaint among writers. One said if they weren’t a writer they’d be in serious trouble. I mean, hearing voices, compulsive behaviours and rituals, taking drugs (caffeine only. By the bucket) suffering from multiple personalities, delusions. . . Not a good prognosis.

So, a writer but not a published one, which means I’m not an author. (Subtle difference but a big one) Does this mean, since I’ve been writing for however many years and haven’t yet had anything published, that I’m bad at it? Not necessarily. Could be I’ve been submitting my work to the wrong places, been unlucky, just need to make a slight change to my style and I’d get there. . . Sometimes it feels as stupid as saying you nearly won the race. Because it doesn’t matter how nearly you were if you didn’t win. But at the same time writing is so subjective, so vulnerable to the choice of judges, the chance of who else happens to write a story like yours but theirs is just a snitch better.

My writing story: how I started writing. It all began in school. I enjoyed English classes, I loved reading, and the only downside was the stories we started in class usually didn’t get finished. It was a ‘write the first chapter’ exercise or ‘we’ll finish this next week’ and we never did. I started writing my first novel while I was in secondary school. It turned into a series of novels which I worked on through college, had a break from for the first couple of years of university but then I got back to in my final year. Those notebooks still sit on my writing shelf.

I wrote on and off after that: For My Eyes Only. Got to writing a bit more seriously a couple of years back. I’d had a bad year health-wise, and writing short stories gave me something non-active and not too intimidating to do. Sometimes the brain requirements fell through, but that could be fixed during editing! I showed my work to a couple of people, I saw a poster advertising a competition, and I was hooked. Competition entering is addictive I tell you! And expensive if you’re not so selective, as I wasn’t that first year. After I weaned myself off the competitions I was still writing, but I was back onto novels: a fantasy YA, Regency romance, contemporary romance, sci-fi, a cosy murder, more romances, a ghost story. Not all of them got finished, but I was enjoying having a go at a bit of everything.

There’s so many different routes to go down now as an aspiring author: traditional agent and publishing, entering competitions and making submissions to magazines and journals, self-publication, crowd-funding projects like on kickstarter. . . And don’t get me started on the social media and marketing side of things! Trouble is, several of those options require investment – pay for manuscript editing and assessment, agents get a percentage, publicists get a percentage, having a proper author website can be costly, getting your book self-published often costs, and then there’s cover design– Sorry, sidetracked. What was I saying?

Oh, yes, lots of different routes to choose from. All requiring (unless you’re already rich) a writer to be also editor, designer, marketer, and all while having a ‘real’ job. I’m currently teetering on the precipice: should I self-publish? I’ve edited (and re-edited over and over and over) one of my novels, formatted it how they want, designed a front cover – thank goodness for my limited art skills right? – and now. . . Now I’m thinking things through, trying to decide whether or not to go ahead.

The writing part is so much fun! It’s everything else that’s the pain. I just then feel bad for all these stories sitting on my hard-disk or tucked away on my bookshelf. I can’t stop writing though, and if I’m going to be spending my time on it I might as well keep sending work out to see if anything comes of it. I guess the worst that can happen is I get rejected. Again. Again, again, again, again, again, again. And it’s not always just a no. I’ve had work shortlisted, and one piece has been accepted for publication. (Who knows when it’ll actually be published mind)

Plus, I could claim it’s therapy and then who’s going to tell me to stop? Yeah.

“In my writing I explore situations and express otherwise pent-up emotions, in a healthy and creative way.”

Definitely sounds plausible.

 

Questions for a Doctor

In the interests of rediscovering all I can about ME/CFS, I made an appointment to see my GP. Although there’s tons of information online, I wanted to get a medical professional’s take on my personal syndrome and how I’ve been coping, current treatments, alternative therapies, and the possibility of starting a family. In ten minutes. It’s possible right?

Here’s something you might not know: just because doctors believe/accept this condition, it doesn’t mean they’re any more sympathetic or know more about it than you do. But I’ll let you decide for yourself.

Highlights of the consultation:

  • I was informed that attitudes towards ME/CFS have progressed since I was diagnosed, and there are therapies to help.
  • I was told I’m lucky not to suffer extreme pain.
  • I was referred to a clinic that specialises in ME/CFS, which means a new round of blood tests to be done first. (The two separate appointments will have their own waiting times of course, ones for the clinic looked to be over a month, so nothing unusual there!)

Bad/worrying points:

  • There was no record of my diagnosis in the system, no mention in my notes of me having ME/CFS. When the GP realised how long it had been since I’d seen a medical professional she was shocked and looked at me like I was crazy. Explaining I was told there was no need for me to see someone unless something changed significantly for the worse (and her admitting they probably couldn’t have done anything anyway) didn’t seem to help.
  • I had it pointed out (several times) that I’ve changed a lot since I was twelve.
  • I was never asked how severe my symptoms were or which ones I had specifically.
  • The advice she gave was to pace myself. Good advice if I hadn’t received it when I was diagnosed and acted on it then.
  • When she heard I lived at home with my parents and had no job she looked more shocked than before and recommended I get a part time job. It would be easy because I have a degree.
  • When I mentioned I’d put off starting a family because I thought it would be too much for me and make my condition worse, she (again) looked at me like I was crazy. There’s no need for that, she said, that’s what a partner’s for, and finding one of those is what a job’s for. (?????)

The result? I have a referral, learnt that ‘acceptance’ doesn’t necessarily make things better, that I was incredibly lucky when I first went to see doctors about my illness, and I’ve had the value of the understanding, curious, ordinary people I’ve met during my life reinforced.

Today there were questions I didn’t ask because I felt my GP hadn’t troubled to understand my condition and my situation, instead making assumptions and judgements. Maybe she’s right and these blood tests will show I have some other condition that can be treated with a pill or an injection or whatever – it has been many years with many changes since I was twelve after all. Maybe I should do what she says: get a job and start living my life because I’m so young and missing out on so much by isolating myself. . .

Uh, wait a minute. What was that about the progression of attitudes toward ME/CFS?

ME, My Family, and I

I’ve been told (by people trying to be helpful) that I shouldn’t let my condition define me: I am not my syndrome. Probably anyone with a chronic condition or life-altering circumstance hears that at some point.

  • Don’t let _____ define you
  • You are not your _______
  • ______ doesn’t change who you are

All very positive and encouraging.

All (in my case and I suspect many others) completely untrue.

How do I know this? Because how could something you’ve had to alter your whole way of life for not alter your personality somehow too. It’s like saying having a baby won’t change you or your life. Yes it will. The important thing is not to let it become the one and only focus. You need hobbies, interests, distractions. . .

Think of it as a question of adaptation. Can you adapt to this circumstance while keeping the essence of you intact? My difficulty comes when the changes are hard to pinpoint. Do I dislike large gatherings because I’m naturally an introvert and prefer my own company, or is it because I don’t do well with crowds or noise anymore and I’ve got used to being on my own because of the ME/CFS? Would I have done a different course at university – gone to a different university altogether – if I hadn’t had to be practical about my health issues?

Where do I end and the ME/CFS begin?

Does this question come up because I’ve had ME/CFS since childhood, or does anyone who’s dealt with it for years have the same confusion?

As well as the personality wrangling and useless questions of ‘what if’, this issue also brings with it a certain amount of fear. What happens if/when I get better? Thinking about getting better when you’re ill may (consciously or unconsciously) occupy a fair amount of time, but what you may not consider because it’s just too frightening is – what happens if this condition does goes away? That safety-net, that logical reason for why you haven’t done things, is gone. Now what? Those things you said you missed and wanted to do, suddenly you can do them. That’s kinda scary. Not to mention the fear that you’ll be okay for a while and then suffer a relapse, because ME/CFS is never completely gone.

So what can you do about all this? I guess it’s like that thing says about accepting what you can’t change, working to change what you can, and being able to tell the difference between the two.

I can’t change the years I’ve lived with this condition, or to a large extent whether or not I recover, or the fact that I rely on my family for a lot of support. I can try to think about why I’m doing or not doing things, acknowledge when it’s plain fear holding me back, and try not to let it. I can remember to do normal things with my family to make sure our interactions aren’t all health-related. I can work on accepting that although ME/CFS still has – and may always have – a huge impact on me and those around me, what they say is at least partly true: my syndrome isn’t all there is to me.

My life is a three-part orchestra not always playing the same tune:

ME, my family, and I

Now I just have to figure out how to turn the cacophony into a harmony. Easy right?

First Confession

My two most dreaded – and the most frequently asked – questions:

  1. How are you feeling?
  2. So what have you been up to?

For me the answer to these supposedly simple questions is either complicated, embarrassing, or something I’d really rather not think about. So I usually pretend, avoid, or out-right lie. Especially to the first. I’ve done it so often and for so long that if I answer the phone, go somewhere, or am face-to-face with someone who doesn’t live in the house that I do it without thinking.

I’ve been told this is a bit of a problem. This condition doesn’t have any obvious outward signs like a rash or a cough, so if I don’t tell people how I’m feeling how are they supposed to know. (I was amazed they didn’t just know, I mean, it’s obvious right?)

So this is one reason for this blog. I’m practising telling the truth, learning how to talk about having ME/CFS, and giving a voice to this condition which is so often too quiet to hear. I’ll keep it short for this first confession – baby steps. (I may use those words quite a bit. They’re sort of a thing I say which I’ll go into another time.)

Any fellow sufferers out there, or do you know someone with the condition? What are your most dreaded questions, and how do you answer them? Post a comment if you’re feeling brave, or go to the contact page to message me directly.