By Joanna Mechlinski
September is a big month for those of us who suffer from chronic pain. Since 2001, it’s been designated by the American Chronic Pain Association (ACPA) as four weeks dedicated to spreading awareness and removing stigma for the estimated 100 million people living with chronic pain.
Think about it. A hundred million people – that’s nearly a third of the American population! Individuals suffering from chronic pain – which is defined as lasting more than 3-6 months and severely affecting normal functions – must struggle just to maintain some semblance of life quality.
As noble an effort as this campaign is, the truth remains that a great deal more needs to be done. A few mentions in the media are a step in the right direction, but they aren’t nearly enough to help the millions living with pain every day. Unfortunately for us, we don’t get to set aside our problems when September ends.
As a person with lupus, fibromyalgia, rheumatoid arthritis and polymyositis – a rare neuromuscular disease – you can be assured I deal with more than my fair share of pain each day. I know that just about no one I’ve ever met has heard of polymyositis before (to be fair, neither did I, until I was forced to). I also know that despite knowing intellectually that conditions such as arthritis affect people of all ages, there is still a notion clinging stubbornly to people’s minds that it doesn’t happen until you’re eligible for AARP. When I mention suffering from arthritis to people who see me regularly, they seem shocked initially. Apparently people sporting ponytails and flip-flops are immune to this sort of thing. And thus I end up becoming a living audiovisual aid for many.
That’s why I like to use social media to advocate for the causes year-round. I often share links to articles about health-related news or graphics with facts about these diseases. Sometimes it’s just a ribbon with a statement such as “Lupus Awareness” or “It’s Chronic Pain Awareness Month.” I don’t do it too frequently; I don’t want people to roll their eyes when they see my name turn up. No one will learn anything if they start to feel pressured or overwhelmed.
To my way of thinking, I’m not simply being an advocate for these diseases. I also help others understand that a person living with chronic pain through illness or disability is just that – a real person. I regularly post about a wide variety of things, everything from my proverbial two cents on the latest news to funny little observations about random things I encounter in my everyday life. I share photos of my 5-year-old mini poodle Charlie (generally asleep, as any pet owner would fully expect) and cartoons relating to my Polish heritage. The bottom line here is, I’m just like anyone else you may meet. I have my likes and dislikes, a sense of humor that often borders on sarcastic, and a personal bucket list. The only difference is, I fight for my life to some extent each and every day – often just by getting out of bed.
But as previously mentioned, there are three of us with chronic pain in any gathering of ten, so while we may indeed be a minority, no one could call us rare. If someone is fortunate enough not to be suffering themselves, statistics indicate that someone close to them – parent, sibling, partner, child, friend – is, meaning they are still affected in some way. It’s time for chronic pain to speak up more loudly and more persistently. Just as it’s not going away for us, we in turn won’t back in sharing our struggles with others. We’re all in this together.
Joanna Mechlinski is a former newspaper reporter who now works in education. She is a chronic pain sufferer who lives in Connecticut and is a frequent contributor to the National Pain Report.