Best Foot Forward: How to make a difference with positive campaigning

This is the 50th blog post since I started my blog in May! My very first post was about some positive M.E. awareness news from Norway, so I’d like to mark the occasion with a blog post about positive campaigning.

In M.E. campaigning, we have the charities and active campaigners in the M.E. community. Together our M.E. awareness campaigning involves targeting decision-makers and opinion-formers such as politicians, journalists and health policymakers, and those whose attitudes and practices impact on the quality of life for individual people with M.E. like health and social care professionals, teachers and employers, as well as the general public. For a while I’ve been thinking about various methods of campaigning, whether they work effectively, and how we come across when talking to people online and face-to-face.

Before writing this blog post and Googling it, I didn’t really know that “positive campaigning” was an actual thing, but I’ve been using it to describe the method of raising awareness I personally prefer. To me, positive M.E. campaigning is encouraging good work when we see it and spreading the facts about M.E. to replace the misinformation with the truth, while also acknowledging where there are still areas of uncertainty, or where research results are still emerging; and where current practice needs to be updated and improved.

I don’t mean it in a feel-good way like they have at the end of the news. I mean giving strong, positive endorsements of solid progress in raising awareness of M.E., new M.E. research, and the support and information resources available for people affected by M.E., as well as pointing out constructively the areas where more progress still needs to be made.

When we have interactions with people who don’t know about M.E., or have the wrong perception of us and our illness, we need to talk in a way that doesn’t leave any doubt in the person’s mind, though it’s difficult to confidently explain our M.E. when we’re in a situation where we need to in order to get our needs met. I’m guilty of avoiding situations where I know I’m going to need to be assertive. For me it’s the countless times I’ve not been believed or received eye-rolling in response, combined with the cognitive problems making verbal communication difficult.

I strive to be more assertive but this waxes and wanes. When I’m not feeling very confident, I’ve almost decided before I hear the end of the question asking what’s wrong, that they aren’t going to believe me, and I probably don’t come across very convincingly. I’ve noticed by experimenting, that this can sometimes become a self-fulfilling prophecy and when I’m feeling confident enough to explain assertively, I’ve been pleasantly surprised at how understanding people can be if I give them a chance.

It struck me in a workshop at the CMRC conference earlier this year, that when someone in our group with rheumatoid arthritis spoke about her illness, she did it with confidence and conviction, which I really admired. She had a physical condition, and nobody had ever doubted it, and there was no need to mention not being believed. We need to take the lead and start describing M.E. in the way it ought be referred to and to talk like patients of other bona fide physical illnesses. To me, this is about leaving the past where it is and moving forward confidently and positively, to make our vision of the future a reality for people with M.E.

The Google search also brought up lots of articles about negative and positive campaigning and which one is more effective for influencing things like election outcomes and changing people’s attitudes. There’s no clear best way, it depends on our specific target group and what we want the impact or consequences of the campaign activity, such as use of social media including tweeting, to be. The key is understanding our targets and what sort of approach would appeal to them, rather than putting them off. Even if we disapprove of an individual’s or organisation’s approach to M.E., the charities might need to work with them at some point to make the changes we want to see happen for people with M.E. Positive campaigning fosters good relationships and doesn’t burn bridges.

We can still address failings by positive campaigning and “fact-based” criticism, if it is necessary, polite, and informative. When challenging stigma, we need to do it in a way that doesn’t reinforce what people already believe about us and our illness. If an interaction doesn’t go well, perhaps we need to reflect on what we said or did, and do it differently next time. I have another blog post about myth-busting and challenging stigma, to be published soon.

One of the reasons I prefer to use positive campaigning is because it’s the way I know works to beat my Post Traumatic Stress Disorder. By taking this approach, I don’t intend to just sweep away the bad experiences we’ve all had as if they never happened. I’ve worked hard at turning my experiences around to use them differently and positive campaigning is my way of preventing myself from being drawn back into the bad memories, by focusing on good news, new research, and collecting useful information for others with M.E.

I try to focus on how we would be treated if we had any other physical illness and how I have seen “good” care to be. This is known in healthcare policy as “best practice”, which I will be publishing a blog post about shortly. This method sets an example of how we would like to be treated but also stops me reliving the painful memories of all the harmful things that have been said, and things that went wrong time and time again because of the harmful advice and lack of care I received, and still do. If you’d like to find out more about PTSD, the Mind website has some useful pages on this.

For example, in my post about studying with M.E., I briefly mentioned the way I’d been treated for being ill on my medical degree and went on to describe how it went better for my pharmacy degree and what it was exactly, which made that experience better and successful this time.

I’m proud to say that, with the exception of the blog posts in the Our Stories section understandably, every blog post has been a positive news story, evidence-based information for people with M.E., or encouraging people to take part in projects where we can have our say, either in the NHS services, health professional education, or research policy.

Below are some ideas for positive campaigning:

• Share positive awareness stories, such as M.E. awareness news from Norway
• Share positive news from the charities you support and MEAction.net
• Encourage the M.E. charities and other people with M.E. who are making a positive contribution
• Share opportunities for the public to engage with healthcare decision makers
• Share trials and biomedical research papers
• Share new publications for people with M.E., such as the new self-advocacy guide from Action for M.E.

Sharing or re-tweeting can be easier if you’re unwell and it can act like having a voice without having to think of words and use the technology.

Let’s get sharing all the brilliant resources and news stories by the charities to help reach people affected by M.E. and to educate the general public about our much misunderstood illness.

More posts about positive campaigning on the way:

• Using best practice to improve healthcare for people with M.E.: What does “good” look like?
• Having a vision for the future of M.E.
• My experiences with stigma and myth-busting
• Planning a successful campaign – a brief summary of National Council for Voluntary Organisations’s campaigning advice, applicable to social media campaigning