In honor of my blog’s one year anniversary, I am going to share with you everything that I have learned in the past year about finding online support for chronic pain.
Yesterday was one year to the day since I entered the world of blogging, found the online chronic pain community, and began to meet people who actually understood what I was going through. It was the first time I had the opportunity to ask questions of people far more experienced at this than me. The first time I felt less alone. The first time I realized that knowing good coping skills and having good support makes this life of chronic pain so much more bearable.
I wish I had found this chronic pain community sooner. The things I know now about finding online support seem so obvious, but they were not obvious to me a year ago.
In truth, finding the right kind of support online is easier said than done. Before I started my blog, I had this vague idea that online support could do wonders for me, but I was unsure how to find it. How do you meet people, I wondered? How do you find the right people and the right groups and the right type of support?
I did not know where to look because I didn’t have anyone to tell me. I had to slowly, over time, figure out where to find the support I needed.
What saddens me most is that the people who read my blog are those who already have this support, and the people who could most benefit from this post will probably not easily find it.
But hopefully a few of you can benefit from what I know now, and what I wish I knew many years ago.
What Doesn’t Work
The first thing I tried off and on for a year or so was various online forums. I am sure that there are some wonderful forums out there, but in my personal experience, they were just not quite as helpful as other social media mediums. Something about the format of forums makes them hard to follow, hard to get to know people, and hard to find people who are actually nice. Just my experience. I am sure they have their place, but I would start elsewhere.
The other thing that I tried at first was lurking in several facebook groups for chronic pain and reading a few blogs that I liked. I didn’t comment or participate. I read other peoples’ questions and gleaned some good information, but it wasn’t all that helpful in the end. If you really want to find support, lurking does not work very well. You don’t meet anyone, make any personal connections, or find individualized help for your unique and specific situation.
Find Different Types of Support in Different Places
The second thing that I realized over time is that you may not find all of the support that you need in one place. I first started my blog not even realizing that it would be an avenue to connect with so many other people. From my blog, I slowly spread out into other social media platforms, all of which seem to offer something different when it comes to support and community.
Likely, you will not need to use every single one of them that I list below. But, it helps to try more than one so you can figure out which one or ones suit you best. Here are a few of my favorites.
The easiest and quickest place to find support is through facebook groups. There are hundreds of facebook groups, so it is really a matter of using the search bar to browse until you find a few that look interesting. Search for “chronic pain” or “chronic illness” in general, and then search for groups that are specific to your diagnosis.
Facebook can be extremely helpful, but you have to be specific about how you use it. The secret about facebook groups is that hundreds of people join, but only about 10% or less of those people actually participate. In addition, different facebook groups take on different personalities and are managed in different ways, so you want to look around until you find a few that will be most helpful. Certain facebook groups can actually be harmful because they are not closely monitored and people say nasty things that make everything worse. Don’t give up on facebook groups if this happens, just see how the admin handles the situation and if needed find a different group that is more supportive.
My personal perspective is that it is much more helpful to participate in just one or two facebook groups, actually getting to know people, asking questions, responding to posts, etc… than to join a dozen facebook groups and never participate. Remember, lurking does not help.
Ok, so which facebook groups to join?
It is extremely helpful to join one of the large facebook groups geared towards your particular condition. These groups are great for practical information about your diagnosis, potential treatments and medications, and ideas for managing various types of pain. Because these groups are often quite large, when you present a question or problem to the group, it is likely that at least one person in the group will have an answer or gone through the same thing.
However, these large facebook groups are not always a great place for emotional support or a good place to vent. Because they are so large, when individuals post something they are struggling with, unless there are people in the group that you already know, people just hope that someone else will respond. You get lost in the crowd.
So, in addition to some of these large diagnosis-specific facebook groups, it is also helpful to join one or two that are a bit smaller and more personal for emotional support. Find one that is for chronic pain or illness but also has a specification that interests you: blogging, Christian, pets, no talk about illness allowed, humor, etc…
Join these groups, and then if you want to get support, you must start participating. You will only get to know people if you participate, and you will only get consistent and helpful support if you know people.
As a side note, the best support I currently receive is through a small facebook support group I created that is secret and is limited to 12 people. Because the group is so small, everybody knows everybody else and we all respond to each other’s posts. We know when someone is going through a hard time and offer all the support we are able. No one gets left behind or falls through the cracks. Starting a group like this is the BEST way I have found so far to get support online. Once you get to know a few people, invite them to a group like this, and you will not be disappointed.
Twitter is also a great place to meet other individuals with chronic pain, and it has a much different feel than facebook.
Although twitter takes a bit longer to figure out and meet people, once you get started, it is a great place to meet people who have years of experience and can answer specific questions you might have. On twitter you will find expert help through doctors, patients with 20 years of experience, and various companies and organizations.
The cool thing about twitter is that, for the most part, people really want to help. Ask questions, and people almost always respond. Send a private message to someone who has 8,000 followers and really knows their stuff, and almost always, they will respond. If they don’t know the answer, they are connected to so many people, that they probably know someone else who knows the answer.
Besides expert help, twitter is another great place to find emotional support. Start to build up a list of people you want to stay in touch with. Fewer is often better. Get to know a few people really well, often interacting with them, and you will start to build close connections.
You can find relevant people by searching for hashtags often used by the chronic pain and chronic illness community. Hashtags such as #chroniclife, #spoonie, and #chronicpain will get you started. Hashtags designating your specific condition will point you in the right direction as well: #migraine, #CRPS, #arthritis, etc…
Another way to meet people is through several chats held throughout the week including #spooniechat and #spooniespeak. These chats not only help you meet people but force you to think through and answer questions that will improve your ability to cope with chronic pain and illness.
If you want to go a bit deeper and start sharing ideas and working on projects with individuals with similar interests, starting a blog is a great way to go. Starting a blog is also a great place if you have a lot to say. You can direct people from other social media platforms to your longer blog posts to get their feedback on things that take more thought to write out.
The secret to blogging is that you really don’t have to be a great writer. You don’t even have to have anything particularly thrilling to say. Some of the most popular blogs are just people sharing their daily lives of pain. They are popular because other people read them and think – me too!
WordPress is a great place to start your blog because you will instantly be connected to a community of other bloggers. If you start a website not connected to a place such WordPress or Blogspot, it is possible, but much more difficult to gain a following and people to interact with. Follow other blogs about chronic pain, comment on posts that you like, and people will eventually follow you back and begin to interact with your blog in return.
Other Social Media Platforms
Facebook, twitter, and blogging are my three favorite places online to find support, but practically any social media platform that you like can be used as well.
Pinterest is a great place to get word of your blog out, meet people creating and writing interesting material, and find helpful practical information.There is a huge chronic pain community on Instagram. Lots of people use tumblr. I am sure there are many others that I am not aware of. If you look and, most importantly, interact with people, you will find support.
Connect Closely with a Few People
After a while, as you pick and choose a few areas of the internet to find support, you will start to meet people and then really connect with a few of them. From here, friendships can be formed, and you will start to give and receive closer support on a more regular basis.
The key is to not be scared to reach out to the people you like and connect with. It is totally acceptable to email or send a private message to anyone, letting them know what you appreciate about their blog, asking them specific questions, telling them what you thought about their comment, or saying what you would love to stay in touch.
Over time, you will develop a great support group of people around you and start to be a support to others in return.
The online chronic pain and illness community is one of the friendliest, most supportive groups of people you will ever find. Everyone has been through so much, developed a great deal of empathy, and knows exactly what you are going through. Take the time to reach out to people, and you will not regret it.