Find The Support You Need in The Pain Community (Interview)

At Medisafe we believe that a support system is crucial for sticking to your meds and better health results (Our Medfriend feature can attest to that). Online communities is a special kind of support system, since it easily brings together tens, hundreds or even thousands of people from around the world with something in common, so they can help each other cope- no matter where they live. In honor of Pain Awareness Month, we would like to introduce you to The Pain Community and its Chair, Maggie:

  1. Tell us a bit about yourself and about The Pain Community:

Professionally, I have an MBA in accounting with experience in banking and business management. I am also a person who lives with a chronic pain condition called Ehlers Danlos Syndrome (EDS), and, for the last 22 years, I’ve been working actively to improve the lives of others with pain. I have served as a board member of several non-profit support organizations including the Ehlers-Danlos National Foundation and the American Pain Foundation. In these roles, I’ve testified at state and federal policy hearings, written articles and coached hundreds of people to self-advocate for better care. A few years ago, when the American Pain Foundation closed its doors, it became clear that there needed to be a virtual resource where people with pain could go to get current information and stay connected with each other (via chat rooms and discussion forums). So many people with whom I stayed in touch, expressed how deeply saddened they were by the loss of their “pain community,” and they were interested in developing a new organization that would provide people with pain with reliable information, education, advocacy, and a way to connect with each other on an on-going basis. Additionally, they wanted the organization to embrace an integrative model of care that focused on wellness and encourages people to actively participate in their health and pain care (see http://paincommunity.org/about-us/key- messages/ for more information). In 2013, after a year of careful planning, The Pain Community was launched.

 

  1. What inspired you to become an active volunteer and Chair of the Community?

Many things have inspired me to become an active volunteer and President of The Pain Community Board. Here are a few of those things. I was diagnosed with the pain condition Ehlers-Danlos Syndrome in the early 1970s. As a teenager, I expected that the pain issues I was dealing with could be “fixed.” Over time, I came to realize that my pain would be ongoing and that I had to find ways to cope with my pain and stay as strong and healthy as possible. I had to do this on my own because there were no organizations or online resources where I could get the information I needed. Being the determined kind of person I was (and still am), I began building up a “toolbox” of skills and activities that could help me understand and manage my pain, cope with my physical limitations, and lead a productive life. One of the most important things I learned is that by staying active and engaged and contributing to others empowered me and had enormous healing power.

Story sharing: Part of my own self-healing included becoming active in patient organizations. In 1998, I became a board member of the Ehlers-Danlos National Foundation, and in 2007, I became a board member of the American Pain Foundation. Serving in those capacities gave me the opportunity to collect and share stories of other people with pain. By doing this, I discovered that “story sharing” was an important tool because it allowed people with pain to connect with someone who listened and understood their challenges; and, for me, as a board members of those organizations, it gave me the chance to communicate the challenges of living with pain to others (family members, the public, policy makers, and the media). The more I did this, the better I became at drawing out people’s stories and discovering what was unique, remarkable, and inspiring about each person. This work, I found, not only helped others, it also helped me cope with my own pain issues and inspired me to get better and better at it and contribute more. The Pain Community gives people with pain the opportunity to communicate with others, feel that they are connected, and have their stories heard.

Information sharing: When I began my “pain journey,” no one was talking about chronic pain as a serious health condition and information was hard to find. Today, pain is a major health topic, but there is still little agreement, among pain professionals, on how it should be treated/managed. And many, if not most, people with pain find it difficult to navigate through the healthcare system, or even find a healthcare professional who is knowledgeable about pain. Many cannot even get a good diagnosis. To confuse things even more, for several years, pain physicians were in their own battle arguing over whether pills or shots were best. Today, there is growing agreement that people with pain need individualized, person-centered care to manage their pain and return to “wellness” and/or a state of wellbeing. The Pain Community supports an integrative model of care (and it’s the only patient organization that does this), and promotes it through the information it offers to members and website visitors; through its support groups (people help each other to regain their lives and be as healthy as possible) and information provided by experts; and through advocacy. For me, seeing how The Pain Community is truly helping people deal with their pain, inspires me on a daily basis. It pushes me to learn more and more about chronic pain and how it can be treated and ways I can better serve the pain management community.

  1. What suggestions do you have for those living with pain and for those caring for them?

Some suggestions for patients:

  • Take control of your overall health and the management of your pain. Start by making healthful lifestyle changes such as eating well, moving/exercising, reducing stress, etc.
  • Insist on a thorough assessment and a treatment plan that includes options.
  • Insist on care that is person-centered and tailored to your individual needs. The plan should consider who you are—in mind, body, and spirit, and in the context of your environment, not just what condition you may have. Insist on care in which there is open communication between you and your health care providers.
  • Understand that there is no single medication or procedure that will make you better. Learn about and consider all appropriate modalities (both conventional and complementary and alternative approaches), and clinicians to achieve wellness (including your physical and mental health, function, meaning and purpose).
  • Get engaged. Get active. As much as possible, start doing things that bring pleasure and meaning to your life.
  • Above all, understand that there is hope—that you can get better. You can become stronger and healthier in your body and mind, and with that, regain function, reduce your pain, and restore meaning and pleasure to your life.

For caregivers, I would suggest helping the person with pain understand the points made above. Additionally, I would say:

In appreciation to all caregivers out there.

  • Be patient and listen actively to the person you are caring for. By listening to the person’s story and complaints, you will be able to help him/her get a good diagnosis and find the right combination of therapies that will help them increase their activities and improve the overall quality of their lives. By listening, you will demonstrate to the patient that you care and that he/she is not alone.

  • Learn all you can about the person’s conditions and ways you can help relieve the pain beyond medications and other medical treatments. This means learning about activities that can be done at home such as listening to music, making art, meditating, eating good food, exercising, etc., and, suggesting therapies delivered by clinicians such as massage and acupuncture.

 

  1. How can people benefit and take part in The Pain Community?

PainCommunity.org offers a host of resources and information that are available around the clock. For example, there are discussion forums where people can always post messages and other people will respond with their experiences or supportive messages. There are hosted live chats several times a week. The chat room is always open even when there is not a host, so people could go there and meet up with somebody who’s somewhere else in the country (or the world) who is also looking for support or interaction. There are lots of great blogs on a variety of topics. Some are informational, some are educational, and some are inspirational. There is an e-newsletter that is distributed with articles information and polls. Poll results are shared in subsequent e-newsletters so we’re always asking questions getting people to participate by sharing their concerns, interests, and tips.

 

  1. What message would you like to tell our users who are living with pain?

The key message is: there is hope. There is hope for feeling better and enjoying a better quality of life. There is hope for getting out there and making a difference. To people with pain, I would say, “Find your voice, tell your story, reach out to others with pain and find out what you might have in common. Connect with others and find resources that would apply to your symptoms.” I would also recommend avoiding communicating only with others that share the same condition. There are issues and situations that apply to all of us with pain. Somebody with joint pain like in Ehlers-Danlos Syndrome for example, will access the same healthcare services and overcome the some of the same challenges as somebody with arthritis or with Multiple Sclerosis.