By Spondylitis Association of America
Monday, September 23, 2019
Director, Brand Experience & Public Affairs
September is Pain Awareness Month. Pain, or more aptly stated, chronic pain, is unfortunately a hot topic that we at SAA hear a lot about from our community. Chronic pain is one of myriad symptoms experienced by our members living with spondyloarthritis and can pose significant obstacles for doing seemingly simple everyday life activities. SAA and other organizations promote this month as an opportunity to raise awareness, better understand, and explore options to manage and treat pain. We recognize that although there have been significant milestones reached through these efforts, there is still much more that needs to be done and that there is another pervasive effect of pain that often lingers – the stigma some of you encounter when seeking relief.
Imagine this. You are sitting in your office searching for the perfect words to capture the significance of Pain Awareness Month and how it impacts thousands of people within your community. Where do you start? And how do you end? Our community deals with chronic pain on a daily basis. My fear as a communications professional serving this community is that my words can never really reflect the pain you’re experiencing or the struggles that you face.
As the Director, Brand Experience & Public Affairs for the Spondylitis Association of America I’m usually a behind-the-scenes figure in the organization until matters such as brand reputation with the media or community are involved. I don’t usually chat on the phone or see many of you face-to-face like some of my colleagues. My interactions are usually reflected in social media or when you hear about one of our many new initiatives via a media outlet.
As someone who does not live with a chronic illness, my point of reference is that of an observer. Therefore, please do understand that I am cognizant of my limitations, and approach with full respect conversations around both the physical and mental components of pain and even its cultural roots.
Pain is our body’s way of telling us that something is wrong, but chronic pain is different from the pain felt when experiencing an injury. Chronic pain continues to hurt – even after an injury has healed. Living with chronic pain means not knowing how you will feel moment to moment. Some days will be better than others, but better is relative. Exercise, medications and other treatment options can help reduce pain, but the pain can return at any time. Not knowing when the pain will return, or how long it will last, can lead to fear and anxiety.
Beyond physical aches, chronic pain extracts a psychological toll as you struggle to maintain or sometimes even remember the life you had before its onset. There is also the challenge of explaining how your body is feeling or not functioning and being told that what you’re experiencing may be “inside your head.” The stigma that accompanies living with chronic pain is an unnecessary and exhausting added burden thrust upon you as you’re already trying to be “okay” even when you’re not okay. It is a burden that you do not have to carry alone. We hear you. We see you.
As a patient centered organization, our mission and our focus are to provide the information and resources you need to live your best life while navigating the complications of a chronic disease. We could not be who we are without you. Our members have a vested interest in supporting the work that we do at no charge as we operate without any government funding. Our mission is driven by purpose rather than profit. Our profit is reflected in how we deliver upon our promises to serve you. And as your community, we care about what you’re facing and how you’re feeling – not just during Pain Awareness Month, but every month.
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