Pain Awareness Month 2025: Chronic Pain Community

Pain awareness month 2025 is here and I really want to share about how important community is and why being an advocate means so much to me. Pain affects everyone differently and it is so important to remember that there is no one way to explain it. I think that is what makes it so difficult for us to explain to people who are not experiencing it.

Living With Pain

In last week’s blog post I spoke about chronic pain, and I think it can be so difficult to imagine what pain every day all day no matter what is like. Right now, as I write this, I am in pain down my right shoulder, my elbow and my hand. It is nerve pain which is like electric shocks down my arm into my fingers, this is constant now; and yet I can push it to the periphery of my consciousness so I can live my life.

However, if you were in the room with me, you would just see a woman sat on the sofa in her PJs typing on her laptop. You wouldn’t see someone sweating or rolling about or moaning about the pain she is experiencing. This is the sort of thing that is seen with short term pain, a broken leg for example, as the person having that sort of pain is not used to it.

But I have had pain like this my whole life, if I reacted to pain like this all that time I wouldn’t have lived a life. Chronic pain is invisible, and because of this is often misunderstood or dismissed because people are used to seeing pain experienced in only one way. Even medical professionals can see us as faking or addicts to pain medication because we do not ‘appear’ to be in pain.

This is totally normal though; pain is something that we learn to live with and if you have chronic pain your experiences are totally valid. I often speak from my personal experience because that is all I know, but I hope by doing so, you feel seen.

Community & Connection

The wonderful thing about pain awareness month 2025, is that it allows everyone to draw attention to chronic pain at once. The community of people experiencing pain is a big one and it is a great time to find one another. It also allows us to get eyes on the community and to hopefully break down misconceptions so that we can have more kindness and compassion.

What I love about this community is that we have so many ways to connect, one way is through finding online groups, forums etc that are connected to the illness or condition you have. Another is looking for advocates online who have chronic pain and speak up about it, like me! I am on Instagram, Facebook, YouTube and Patreon I also have a Discord Server which is like a forum. You can gain access to my Discord simply by following my Patreon as a free member.

I have found so many friends and support by following my favourite advocates and then leaving comments. Its wonderful because you can connect with them but also with other people who follow them. I have found so much help and understanding as well as tips and tricks that have helped me and eased my pain by doing this.

Pacing & Managing Energy

A major thing that has helped me about getting involved with the chronic pain community, has been learning things to help. One big help for me, has been learning about pacing, or breaking chores into small chunks which helps ease pain flares a lot. There are also a lot of items that you can buy to help with everyday tasks, Chronically Jenni is amazing for this, and I have a lot of things that have helped me she has suggested.

For me, the main thing that helps is to always sit whenever I can while doing things and to rest between anything I need to do. Rest breaks can be spent reading or lying down and watching something on YouTube. But a good half an hour to an hour rest between tasks I need to get done reduces both my pain and fatigue flaring and helps me get through the day.

Advocacy & Awareness

Pain awareness month 2025 can be the perfect time to step into being an advocate for yourself and for the community. It doesn’t mean that you have to do what I do, but being active in the community by sharing your experiences in comments can be a big help to creators and others in the community.

If you do have social media, you can share articles and news about disability, and pain so that people can read them who are close to you. It could also be a time to share stories or posts about your own experiences if you feel comfortable to do so. What I love on Instagram now is that we can share posts and reels now so people who follow us can see them.

These small, free, steps can make a big difference not only to raising awareness, but also to the advocates that you follow. People like me, who make YouTube videos, blog posts and social media posts rely on being seen and people interacting with them to do well. So, next time your favourite advocates make a post, like, comment and share.

I really hope that pain awareness 2025, is a time of raising awareness and breaking down misconceptions so that we all feel and receive more compassion. Kindness is very much needed more of in this world so anything we can do to foster that is a good thing. Please do share your own experiences and thoughts in the comments here and on my social media I would love to get us talking.

Spoons and Sparkles xx

If my words or videos have brought a little cosiness to your day, you can support me on Ko-fi with a tip or join my Patreon for just £2 a month. Your kindness helps me keep creating both here and on YouTube.