Pain is personal, isn’t it? Two people who live with the same condition experience it differently. That doesn’t stop them from understanding the pain they each live with. In support groups, people really do understand how the pain affects you. But do other people? Is it possible to help people understand the pain?

After I published this post to explain what trigeminal neuralgia feels like, someone told me that nobody understands the condition, so there’s no point in even trying to explain it.

But isn’t that the whole point of awareness for any health condition? People will never understand if we don’t explain.

Nobody can feel someone else’s pain but most people are capable of understanding it after a simple explanation is given.

Awareness Can Help People Understand Pain

Some of my friends understand that I live with pain but don’t know all the details. That’s fine because they don’t need to know everything. But the people who matter to me probably know as much about my health conditions as I do. They understand the severity of my pain and that it can be unpredictable and tiring. They also understand that some days I need to hide under my duvet.

They understand because I’ve explained it.

Some of my family and friends have shared my awareness posts on Facebook. Some of their friends have commented on those posts. Some of them had never heard of TN but now they recognise the name and understand the severity of the pain. Others were TN sufferers and some people who’ve lived with undiagnosed facial pain. After seeing the posts, those people have realised they’re not alone and that there may be more help for them.

On my blog, I have received comments from people who had never heard of trigeminal neuralgia before. Now they have an understanding. I have also read comments from people who’ve said things like, “My friend lives with chronic pain but doesn’t talk about it. Reading your blog post has helped me to understand what she goes through.”

That is the point of awareness.

It’s Frustrating When We Believe People Don’t Understand

People feel frustrated at times (especially on social media) because they write or talk about their condition but get no response. They believe this to be a sign that people don’t understand or care about their health. But that’s not normally the case.

Sometimes people simply don’t know what to say. Some people only like to use Facebook for fun and to socialise. Funny memes are more appealing than posts about someone’s pain. That’s their choice but it doesn’t mean they don’t understand or care.

People don’t actually see your posts

Facebook algorithms mean that people might not even see our posts. If we share a post with thirty people, perhaps only one person will see it. But surely it’s better to reach that one person than none at all? That post might make a difference to someone. That post might help people understand your pain.

Other People Have Problems Too

When people are dealing with problems themselves, they might seem as though they’re not interested in your health. If it’s someone who matters to you, try to talk to them. They might be needing some understanding too. They might even have an invisible illness themselves which you know nothing about. A little kindness and compassion could make their day better.

I am Capable of Understanding Other People’s Pain

I know that many people say, “but nobody can possibly understand a condition like trigeminal neuralgia.”

But they can.

Obviously, non-sufferers can’t feel or experience my pain, but most people are capable of understanding. Most people can have compassion and empathy even though they don’t experience the pain themselves.

I don’t need to break a leg to understand how agonizingly painful it must be. Nor do I need to have cancer to appreciate the pain and the distress which comes along with it.

I understand facial pain because I live with it. Likewise, I understand back pain, arthritis, osteoporosis and coeliac disease because I live with those conditions. I understand a few other health problems like broken ribs, pancreatitis, migraine, kidney stones and gall stones because I’ve suffered from them too.

But those aren’t the only health conditions I understand. I’ve seen friends and relatives suffer from cancer and heart disease. My Dad goes through kidney dialysis three times a week. A close relative lived with a serious neurological condition when he was very young. I read about other conditions which chronic illness bloggers write about.

Thankfully, I don’t have any of those illnesses, but I am capable of understanding. Pain is personal and I can only feel my own. I can’t feel other people’s pain but I can understand it.

Other People Are Capable of Understanding Too

Perhaps we all need to start giving other people more credit. They might not always understand the intricacies of the condition, but most are capable of understanding the pain we live with.

They might not research it and they might even forget the name of the illness. Instead of asking about trigeminal neuralgia, they might ask instead about the ‘headache’. That doesn’t mean they don’t understand. They’re showing concern and surely that’s more important than researching or remembering a name.

They might suggest taking over the counter headache pills which we know won’t take our pain away. But they are trying to help. It means they understand enough to know you’re in pain.

Some People Don’t Try to Understand

We probably all know of some people who aren’t interested in trying to understand our pain or illness. For some reason, they would rather we didn’t share posts or talk about our health and some of them will tell us that. This happened to a blogging friend recently. You can read her story here.

Hopefully, those people are in the minority. We can’t change their opinions and it’s not worth using energy trying to. But we can try to help other people, people who care, to understand our pain.

How to Help People Understand Your Pain

• Stay calm, keep the information factual and simple
• Pain can’t be seen so you need to explain it well
• Explain the emotional feelings you experience too
• Explain that every day might be different so they can appreciate the unpredictable nature of the pain
• Explain what you’re capable of doing, what you’re not capable of doing and what you need help with (They don’t know how to help unless you tell them)
• Writing it down might be easier (and therapeutic) for you and give them time to digest it
• Keep the medical information basic unless they want to know more (Accept that everyone doesn’t want or need to know all the details)
• Point them to trusted websites for more information if they want it
• If it’s someone close, ask them if they’d accompany you to appointments so they can ask questions too
• Give them time to take it in

It’s also worth remembering that it’s difficult for loved ones to see you in pain. They might be upset, worried and concerned but do not know how to express that. They might also have problems of their own. As well as talking to them, we need to listen and give them support too.

Do you agree that despite pain being personal, non-sufferers can still undestand what we live with? Please leave a comment below to let me know what you think.

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