One of the most difficult parts of living with chronic pain is the isolation that it can cause. Because chronic pain is an “invisible” illness, it is very difficult to explain what you are feeling or going through. As well-intentioned as family and friends try to be, sometimes they just don’t get it. That’s why chronic pain support online, through social media sites like Instagram or Facebook, can be so helpful for patients. Here’s our favorite sites and chronic patients posting on them.
Why go to social media for chronic pain support online?
While some may believe that increased use of social media increases social isolation, research from the Pew Research Center in 2009 found that those who use social media of any kind actually have stronger, more diverse social networks than those who do not.
This is a significant finding for those living with chronic pain, as pain can make it difficult to get out of the house. The Internet is bursting with resources for chronic pain support. This includes support groups and forums, Pinterest boards, Instagram accounts and Twitter feeds. This torrential stream of social media can be a blessing for those suffering from chronic pain. And they provide many ways to get support and feel heard, even on the days you don’t want to leave the house.
There are chronic pain forums to get answers to specific questions, Pinterest pages for inspiration and the very latest treatments, and Twitter for weekly chats and camaraderie. Here are just a few of our favorite resources online.
Forums for chronic pain support online
Online chronic pain support groups can be invaluable, especially when getting out of the house is not an option. We manage a robust chronic pain forum and the Faces of Pain site.
Daily Strength is another active chronic pain support community that is moderated and up-to-date, both positive qualities for an online support group. There are many other support groups, and the key is to find a good fit for you.
Forums are another good way to get support online. In a forum, you can post questions, successes, challenges or anything else in a moderated space. Members of the forum will respond if they have something to offer. The same rules for forums apply as for online support groups (moderated, active and recent posts), but online forums also have other categories for members that don’t specifically deal with chronic pain. This can be a nice break and a good way to get to know other people separate from their condition.
You can find even more groups and forums in a recent post from Pain Doctor.
Famous for spreading rumors and sharing family photos, Facebook can also offer an excellent way to stay in touch with fellow chronic pain sufferers and physicians, including your doctor. Many physicians are now using Facebook to organize their practices, offering scheduling options and access to their websites in one easy place.
New research, treatments, articles, and funny memes are also a great feature of many Facebook pages that offer chronic pain support. Pain Doctor shares recipes, research, and updated conference dates and treatment options. Even better, our Facebook support group has over 35,000 members with global, 24/7 support for chronic pain patients online.
Pinterest boards are a great way to make a note of resources, inspirational stories, recipes, and more. It can be addictive, with one interesting board leading to another. The good news is that each board can be easily named and organized so you can keep all of your information in neat categories. In many ways, Pinterest replaces bookmarking websites, with the added bonus of being able to access your Pinterest page from any computer. Search for “chronic pain,” “chronic pain tips,” and “chronic pain recipes,” to find inspiration.
As of April 29, 2014, 255 million people sent over 400 million tweets a day through this highly interactive social media platform. The potential for inspiration, support, information, and updated research on chronic pain is endless. Search for #chronicpain, #chroniclife, and #spoonies to find fellow sufferers.
@DrNinaRadcliff is a practicing physician sharing information and promoting Pain Awareness Month with her tweets, while @Chritty77 shares her experiences as a patient.
Instagram can be a useful tool for helping increase positive feelings. Designed to share photos with quick captions, Instagram now enables you to post a 15-second video.
So what does this do to support chronic pain patients? As with Twitter and Tumblr, patients can use hashtags to search for relevant keywords, including those for inspiration.
For example, by looking at her, you’d never know model Jesse Golden, with her svelte figure, light blue eyes, and long pale blonde hair, has a serious medical condition that incapacitated her for some time, leaving her barely able to walk. Her Instagram feed, @jessegolden, is filled with provocative images from modeling and occasional reposts from her other Instagram account, @thegoldensecrets, that’s dedicated to publicizing the healthy practices Golden says allowed her to regain her health.
Golden is among several Instagram personalities who work to minimize chronic pain from autoimmune diseases and fibromyalgia and post about their journeys along the way. These women offer abundant inspiration to other chronic pain warriors and show that living a full life is possible with enough dedication and discipline. Instagram personalities successfully fighting chronic pain through diet and exercise provide inspiration to those needing a pick-me-up.
Jesse Golden aka @jessegolden
Golden’s story begins in 2008, when she was diagnosed with rheumatoid arthritis. This is an autoimmune disease that results in painful inflammation, particularly in the hands and feet. Because it’s an autoimmune disease, the potentially joint-deforming condition results from the body essentially attacking itself. There is not currently a cure for the condition. Treatment generally involves a cocktail of strong drugs with potentially difficult side effects.
Golden first tried a variety of natural cures, including the Ayurvedic diet, which is derived from ancient Indian medicine and focuses on foods for your body type, and the Macrobiotic diet, which emphasizes grains and vegetables. She also experimented with Chinese herbs and special healing clays, but nothing worked.
Finally, nearly immobile, she tried traditional pharmaceutical drugs, but not for long. Over the past several years, she has healed herself into remission through a mix of diet, yoga, and spirituality, the techniques chronicled on the blog, The Golden Secrets.
Masumi Goldman aka @masumi_g
Masumi Goldman, known on Instagram as @masumi_g, is a mom and former Wall Street analyst who, in 2011, began experiencing terrible hip and foot pain, she describes on the website of the Kushi Institute, a center for macrobiotic education.
Goldman grew up eating the macrobiotic diet, but she eased into the standard American diet once entering college. Pizza, cereal, and other processed foods infiltrated fruit and vegetable staples.
Soon, she developed horrible seasonal allergies, recalling:
“I did not make the connection at the time, but in retrospect, it is crystal clear that these allergies were associated with the dietary and lifestyle changes that commenced with my leaving the nest.”
Later, came odd aching and burning feelings that made even walking difficult. Goldman sought doctors’ help, and ultimately underwent blood tests that showed abnormalities. Goldman’s condition is similar to rheumatoid arthritis, but involves acute flare-ups instead of gradually developing ones. “My doctor told me that I had my own variation of an autoimmune disease that affects joints and ligaments,” she writes.
Instead of taking harsh drugs designed for rheumatoid arthritis, Goldman adopted the macrobiotic diet that kept her healthy throughout her childhood. The diet emphasizes eating local foods, changing ingredients to reflect the season, and respecting local environments.
On her Instagram, Goldman posts images of inspiring yoga poses, and chronicles the ups and downs of managing her disease. She also occasionally provides updates about her daughter, who recently received a kidney transplant donated by Goldman’s husband. Masumi credits fitness and a positive attitude for her ability to face life’s difficulties and make the most of everyday.
Kerri Verna aka @beachyogagirl
Kerri Verna, posting on Instagram as @beachyogagirl, is a yoga teacher and fitness enthusiast living with fibromyalgia.
Verna doesn’t talk very often about the condition, but it’s difficult to even notice that she has it, with her awe-inspiring poses and handstands that frequently take place on the beach. The caption underneath a photo of firefly pose reads:
“Firefly has never been a favorite of mine because of my tight psoas (muscle) and hamstrings. I also have sciatica, carpal tunnel, arthritis, fibromyalgia, and ganglion cysts in both wrists just to name a few of my ‘limitations.’”
Some days, Verna adds, she feels weak and insecure. “But,” she adds, “I do not allow myself to stay in that place.” Our thoughts create our reality, she writes. “I view my limitations as a gift now… My body’s way of slowing me down and letting me focus on more important things.”
On another post, Verna says that fibromyalgia-related pain does make some poses inaccessible on some days. She adds:
“[B]ut here is what I know. If my emotional and spiritual health is not well, it usually always manifests in a physical way. I also have to make sure that I’m eating well, sleeping well, and my stress is limited. If I’m holding on to anger, hurt or resentment, I will most always be in pain.”
Tumblr
This is another form of chronic pain support online, with a few benefits from other sites:
- Tumblr is a way to bring everything you enjoy about social media in one place. This makes it easy and hassle-free. You don’t have to check five different locations for five different types of posts.
- This also hosts a very supportive community. While Facebook and Twitter can be harsh and critical, Tumblr users seem to universally accept the differences among them.
- Following (and unfollowing) blogs is easy and not very public. This means that if you want to unfollow a Tumblr user, there is no way they will notice.
To get you started, here are five of our favorite Tumblr chronic pain blogs.
1. Spoonie Strong
Even though the owner of this blog is currently experiencing traumatic financial hardship, they still manage to post inspiring quotes and supportive links regularly, including a re-imagined graphic of the pain scale that features bees, bears, and ninjas.
2. Broken Crayon
For chronic pain sufferers who appreciate art and design, this blog is for you. Beautiful watercolor illustrations accompany quotes and conversations with blog followers. This blog is also a great example of the possibility of a deeply personal Tumblr site that moves away from a simple template.
3. Chronically Something
This blog features the daily challenges of living with chronic pain, both from the curator of the blog and from the blog’s followers. Scroll down to read about running through an airport and its aftermath. This blogger clearly understands what those without chronic pain do not.
4. Life Is Worth Living
While this blog is not always safe for work and often contains profanity, we love it for its honest, thoughtful, and thought-provoking way of dealing with multiple diagnoses, including mental illness. Some of the posts can be triggering, and the blog curator marks those clearly. Worth following if you have struggled with depression, anxiety, addiction, or self-harming.
5. Dana The Paina
This autonomous blog is curated by someone who has lived with chronic pain for 25 years and is a thyroid cancer survivor. That alone is enough to inspire us, but her blog is also funny, warm, and supportive. This is a great place to start building your community on Tumblr.
Do you have any other sites you go to in order to find chronic pain support online? Share your favorites in the comments! To find the chronic pain support and treatments you need, find a pain specialist near you now!