Simple Ways to Spread Awareness About Your Health Condition

We’re in the last few days of September which is pain awareness month and about to enter October which is facial pain awareness month. Those can be two busy months in my calendar so I often want to hibernate during November! I say busy, but what I mean is that I am busy from the comfort of my armchair or sometimes (actually very often) my bed. Spreading awareness doesn’t need to be difficult. In actual fact, there are many simple ways you can help to spread awareness, just like me, from the comfort of your own home.

I often hear people say that we need more awareness, especially for conditions such as trigeminal neuralgia. That’s so true…we really do. Trigeminal neuralgia is a condition that not too many people have heard of until they or a friend or relative receives that very unwanted diagnosis. But a lot more people know about it now compared to a few years ago and that’s down to people spreading awareness.

Why Trigeminal Neuralgia Needs Awareness

Ways to Spread Awareness (Without Running in the London Marathon)

Many people think that spreading awareness needs to involve some form of strenuous activity like sky diving or running in the London marathon. But it doesn’t. We’ll leave that kind of activity to healthier people (unless you really want to don your running shoes, of course!)

There are many ways to spread awareness. Simple ways, which don’t break the bank or cause you to break a sweat.

Simple Ways to Spread Awareness

Share Your Own Story

Not everyone is comfortable about sharing their health issues and that’s fine. You have to do what’s right for you. But if you do want to share your story, there are several ways to do it.

Ways to Share Your Story

Talk About it – I’m not suggesting you should become a doom and gloom merchant and talk about your pain or illness all the time because that would simply make people switch off. But when people are genuinely interested, talk about it. Try to keep it short and explain it calmly in simple terms so they can understand. If they’re still interested and want more details, then you can get a little more technical or direct them to an informative website.

Say the Name – That sounds simple, doesn’t it? But sometimes people don’t use the actual name of their condition. They might use a nickname or just say they have a headache because the name is not recognised or difficult for people to remember. But if more people say the name, it will start to become more well known.

Blog About it – Blogging about health conditions is important. Chronic illness bloggers allow people to take a peek into their lives allowing them to see the reality of living with their health conditions. I blog because I am passionate about helping people to understand more about the conditions I live with. Blogging really is a fantastic way to spread awareness (it’s also pretty therapeutic) so if you enjoy writing, go for it. Not sure where to start? Click here to learn more about it.

Make a Video or Podcast – This is a video I made about trigeminal neuralgia. I admit, it’s not brilliant, however, it was simple to make and it explains what trigeminal neuralgia feels like.

Many people with health conditions have podcasts to share information and to interview other sufferers and experts. I can’t give any advice on how to make a podcast, but if you like to talk, you could give this a go by using a platform such as Anchor.

Contact National and Local Television Shows, Newspapers and Magazines They won’t publish everyone’s story, but every now and again, they will. They might want to share yours.

Contact Health Websites and Blogs Many websites, like The Mighty and Pain Resource publish people’s stories. And bloggers are often happy to accept guest blog posts.

Make the Most of Social Media

Sometimes I think social media was created especially for those of us with chronic health conditions. We can get support on social media groups, but using it as an awareness platform makes our efforts so much easier. I am sure less people would know about rare conditions such as trigeminal neuralgia if we didn’t have social media so make the most of it.

How to Do This:

Use Hashtags When you write about your condition on social media, always use a hashtag when writing the name of your condition. More hashtags mean the condition’s name will trend. When a hashtag trends, it gets noticed.

Social Media Frames Use a frame on your profile picture with the name of your condition.

Do you need a Facebook frame for trigeminal neuralgia or facial pain?
We made some on End Trigeminal Neuralgia which you can find along with others here.

Design and Share Posters Eye-catching images with simple wording that stands out often get shared well on social media. If they’re really eye-catching, they might even go viral.

Work in Conjunction With Other Groups and Organisations Awareness efforts will always work better if more people work together.

Share and Interact When you see awareness posts on blogs, Facebook, Twitter, Pinterest and Instagram, please share and interact.

• Click the like buttons (On Facebook, click the ‘love’, ‘care’ or ‘sad’ buttons rather than the ‘like’ button)
• Comment on social media and blog posts
• Share them using the share buttons.

All platforms have algorithms which decide how many people should see posts. When they think a post is popular, they will show it to more people.

When there is more interaction, the algorithms believe the post is popular. On Facebook, the algorithm thinks that if people ‘like’ the post, it was just mediocre. But if it the other reaction buttons were clicked, Facebook can see that the post has evoked a much stronger response, therefore, it must be popular.

It’s the same with blogs, if viewers comment on them and share them, Google thinks it’s a popular topic and will make sure the blog is easier for other people to find. 

Contact Charity Organisations

Contact the main charity or organisation for your condition to ask if you can help in any way. They might have suggestions. Ask them if they have a specific theme for awareness and if they have, you could write or make posters around that theme. Nowadays, a theme normally involves a hashtag so remember to include the hashtag when posting and sharing.

This year, the Facial Pain Association have suggested using the following hashtags for Facial Pain Awareness Month.

 #FaceTodayTogether

#MyTNStory #MyGNStory #MyGPNStory #MyONStory

Please use #FaceTodayTogether then whichever other hashtags apply to you.

Contact Politicians

Write to them and tell them about your condition and how it affects you. Tell them it needs more awareness or funding. Quote numbers if you can and ask them to discuss it in parliament.

Also, write to them about matters which worry or concern you about sickness benefits or guidance on pain relief.

Send them links to official charity sites so that they can access more information.

Make the World More Colourful

Many places change the colour of their lighting on buildings and bridges on request so you could help to turn the world teal or pink or purple or any other colour…but if you do, please explain to people why.

Toni from TNNME has been organising this every year for people with trigeminal neuralgia so that buildings and bridges turn teal for TN awareness.

If lights are switching colour for your condition in your area, contact your local newspaper and any local community groups to let them know why. Someone might say, “I’ve got that illness too – I thought I was the only one!”

Wear it With Style

You could paint your nails in the colour of your condition’s awareness ribbon or you could throw caution to the wind and dye your hair…but always explain to people why you are doing it so they don’t think it is just a fashion statement.

Or perhaps you could wear a wristband, pin, ribbon or an item of clothing to support your cause. Many charitable organisations sell them, so the money you spend would be helping them. Or, you could grab a marker pen and make a statement on a tee shirt yourself. Keep the wording short and make it bright and witty if you can so that it stands out. If it’s noticeable, people will hopefully ask questions about it and that’s what awareness is all about.

Share Your Ideas if You Think of Ways to Spread Awareness

If you don’t want to or you don’t feel confident about writing or making graphics but you think you have a good idea, please don’t let that idea go to waste. Share it with someone from an awareness page or an organisation. You might have come up with the perfect theme for an awareness project.

Whatever Way You Choose to Spread Awareness, You’ll Be Helping

Whether you share your story or you share some awareness pictures, you’ll be helping your cause. Whatever way you do it, you’ll be spreading awareness.

Awareness of health conditions is so important but it’s not just needed during one particular month in the year. It’s needed all year round. It helps non-sufferers to understand more, it helps sufferers to feel less alone and it might help a charity to get more funding. But it could also help an undiagnosed person in their search to find answers. When they become desperate and exasperated, they might turn to Google to research their symptoms. If they do that, they might find your story. You could make a difference in their life. A huge difference.