If we’re not happy, we have to change things

Meeting Ed Miliband

As some of you may know I met Ed Miliband last week. He came into my workplace (which was entirely unexpected) and I got the opportunity to ask him some questions about what the Labour party’s plans were for people with chronic illnesses.

He seems like a nice man, and he was engaging and polite, but the opportunity to talk to one of the UK’s top politicians got me thinking more broadly. I started to dwell on the individual responsbility that each of us have to encourage those in power to help us.

I’ve personally lost count of the number of people who want their healthcare increased, or want some improvement in how they see their GP or specialist, want shorter waiting times, or more regular support for their illness but also want someone else to sort this out for them.

I’ve talked in the past about how the main way I’ve managed my pain using self care and pain management, well I think we should use the same principles to change how we want our illnesses to be managed and perceived by wider society.

Put your hands up

I couldn’t have lived with myself if I got that close to Ed Miliband and didn’t ask him a couple questions and give my perspective, not just on supporting women with endometriosis, but also lots of other people with hidden, long term illnesses.

I felt it was my duty to those of you who struggle on silently with pain every day.

While it’s certainly true that other people are better qualified to decide how things should change, it is our responsibility to make sure those people know what to change. In this day and age it’s not enough to just complain anymore, (nearly everyone I know has that skill in great abundance). We have to stand up and shout about what we want to improve, and we have to shout often or we risk losing traction.

This remains one of the few ways anything will ever improve.

One of the positives of chronic pain (and there aren’t many) is that I feel much more able to speak my mind, illness has given me the confidence to challenge people to try and get what I want and decline what I don’t.

This picture evidences what I mean:

Who wants change? Who wants to change?

Sometimes I feel like the sole hand in a sea of uncomfortable shuffling. I hear endless suggestions and complaints about what people want to improve and when it comes down to taking the time to write a letter or register dissatisfaction with something, or raise a formal complaint the answer is always “yeah I will” and not “yes I have”.

Don’t get me wrong, this isn’t a complaint in itself, think of it more as a call to action.

The way governments, hospitals and people in power interpret our silence is tacit approval, that everything is okay and that there are no problems. When it’s almost the exact opposite. People in positions of power rely on our inability to constructively point out the issues in our health systems because our silence maintains the status quo for a little longer. It helps services limp along without any extra investment, it doesn’t make it obvious to people who control the cash flow where the problems really are.

Some of us may actually be enforcing their complacency by using a little complacency of our own.

You can find a way

I know we’re all tired and in pain but that’s precisely why we have to stand up and ask for help, demand change and stand up those among us less able to do so. Otherwise how do we expect anything to improve?

These days rather than complaining I try to focus that complaint into something more useful. I write a letter, I organise a meeting, I contact radio stations, I write to newspapers. I try to help others with what I’ve learnt. I raise awareness and try to improve things for those that come after me.

If I’m out of ideas, I think of more. It really is as simple as that.

Things are not hopeless or pointless, and I’d personally rather try and fail than not try at all. And that’s why I introduced myself to Ed Miliband. If any other politicians, doctors, consultants or broadcasters come my way, I’ll do exactly the same thing over and over, for as long as I need do.

Need some ideas?

There are always tons of things you can do, and I challenge you to quit making excuses and do three of them, and come up with three of your own.

  • Sign all and any petitions about healthcare and pain
  • Write to your local MP
  • Share or retweet this post
  • Talk to people around you about your illness
  • Write to your local Clinical Commissioning Group – point what what needs doing and why
  • Go to any local illness events and talk about your experience
  • Join your local Healthwatch group – put your illnesses as your interests
  • Contact TV/Press/Radio and share your story
  • If you’re not happy with your GP service – raise a complaint
  • Go to your local expert patient group and tell others about it
  • Start or join a support group
  • Put posters about your illnesses in GP surgeries

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My name is Michelle and I've been living and working with endometriosis since diagnosis in 2010.

I hope to provide some hope for this illness through practical advice and discussion of this awful disease.

My other sites

Pioneer Project - Video games, UX and sustainability