Chronic pain can be a very isolating condition. Friends and family members may not be able to understand the daily struggle to complete the simplest of tasks, and they may be worn down from caregiving. It is essential that chronic pain patients get the support they need as part of their treatment plan, regardless of where they live or when they need it. Chronic pain support groups online can provide that support, 24/7, all over the world.
Benefits of joining chronic pain support groups
There is tremendous benefit to joining a chronic pain support group online.
Access: Anyone with an internet connection or smartphone can access people who understand what’s going on at any time of day. This can be invaluable especially for people who live in rural areas that are underserved in terms of face-to-face chronic pain support groups.
Anonymity: Some chronic pain patients prefer to keep their struggle private. In a small town, this can be difficult if there is one face-to-face group that everyone knows about. Chronic pain support groups online allow patients to maintain privacy while discussing intimate details of their pain and treatment plans.
Availability: This is closely tied to access but is a key point. For some chronic pain patients, the middle of the night can be a very difficult time. Online chronic pain support groups ensure that there is always someone awake when you need them.
Here are five chronic pain support groups online.
Pain Doctor offers a variety of chronic pain support groups online, including forums, social media options like Pinterest and Twitter, and a place to share your story. We want everyone to know that chronic pain affects real people. It is important to us that we offer a place for chronic pain patients (and their loved ones) to share their story and find support.
This Facebook group moderated by Pain Doctor has over 36,000 active members offering support, advice, and an ear at any time of the day or night. There are ten highly involved administrators and clear guidelines for conduct and participation, designed to protect the other members. This group is listed as a closed group, but anyone can make a simple request to join. The mission behind this page is simple:
“This group is for SUPPORT – where you can share and vent. We strive to be POSITIVE, SUPPORTIVE, and INSPIRING.”
The American Chronic Pain Association (APA) has support groups in all 50 states. Their focus is not on symptoms or applying treatments. These support groups want to encourage all members to actively participate so that they can make daily life better for themselves and the others in the group:
“The goal of an ACPA group is to provide support, validation, and education in basic pain management and life skills. Groups are facilitated by the group members themselves and the success of the group is a shared responsibility.”
If there is not a support group that is local, chronic pain patients are encouraged to start their own. This group can meet strictly online if that is what is needed to reach the most members, or the group can be a mix of online forums support and in-person meetings.
SupportGroups is an over-arching online forum that offers many different types of support. For chronic pain, their forum has over 12,600 active members. Members can post how they are feeling or updates on their treatment to receive support, advice, or just a willing ear.
While we would not normally recommend an unmoderated support group, this particular chronic pain support group seems to be a truly supportive, non-judgmental space for those needing a kind word. All posts have responses that are receptive and open.
If you have other comorbid conditions such as depression, there are support groups for that on this same site as well.
Our final chronic pain support group online is MDJunction, a great place to not only connect with others online but to also start and maintain an online journal of your personal story with pain. This is a general support group for chronic pain but does connect to other specific conditions, such as fibromyalgia.
As always, follow some simple safety guidelines when participating in chronic pain support groups online. Do not reveal personal information such as your address, the names of your family, or where you work. Look for forums and groups that are moderated and follow some guidelines for interacting (e.g., no personal attacks, no profanity, etc.).
Look for groups that have regular, consistent participation and a good number of members. And finally, remember that any medical advice given in these forums does not replace working with your doctor in real life. It is important to keep those lines of communication open.
Have you ever participated in any chronic pain support groups online? Which ones?