Helen King is a longtime Arthritis Foundation volunteer who has made a significant impact locally (Eastern Pennsylvania and Southern New Jersey) in the fight against arthritis — and is a new member of our national board of directors. Here, she talks about the Foundation’s pain management strategy.
By Helen King, King of Prussia, PA
Last spring, I was pleasantly surprised to be asked if I’d be interested in joining the Arthritis Foundation’s national board of directors. I was. And I was voted in by the full board this past summer. What an honor and privilege this is to me, after volunteering for the Foundation locally over the past few years.
I was diagnosed with acute onset, and aggressive, rheumatoid arthritis (RA) in 2014. I didn’t expect this sudden diagnosis, and it felt like a death sentence at the time. I pictured myself being immobile, wheelchair bound and worse. I’ve also been diagnosed with osteoarthritis, degenerative disk disease and spinal stenosis. I underwent spinal surgery several years before my RA diagnosis. Perhaps that’s when my RA started developing. We’ll never know. Learning I had RA was a tough blow, and I didn’t know where to turn until I found the Arthritis Foundation.
Getting involved with the Arthritis Foundation is a way for me to give back. Over the past few years, I’ve volunteered as a Platinum Ambassador, speaking up to help enact new laws that make health care more affordable and accessible. I’ve led my local Walk to Cure Arthritis team, and together we’ve raised around $300,000 for arthritis research and resources since 2017. I’ve led local and national Live Yes! Connect Groups to help bring our community closer together, especially during the pandemic.
That’s how it all started. And it’s why I’ve immersed myself in the arthritis community. This is a genuinely supportive family. It’s such a great support system of people you meet along the way as a volunteer. I know I’ve made an impact on people locally. And I’m just so grateful and humbled to now give back on the national level. I can bring even more of the patient perspective into the mix as the Foundation’s pain management strategy comes to life. That’s what I’m excited about.
From my view as a patient: I’m really glad that the Arthritis Foundation is putting a special focus on pain management over the next few years. Pain permeates everything, and it’s very individualized. If you’ve never lived in chronic pain, it’s kind of hard to understand how it can seep into every part of life. It impacts you socially, financially, emotionally, mentally and spiritually. Living with chronic pain every day changes who you are.
Pain can affect your mental health and your ability to sleep well. It can lead to depression and anxiety. I think it’s great that the Arthritis Foundation’s strategy encompasses the mental health side of pain, which needs to be recognized and focused on. I don’t think most people, including experts in the medical community, realize the extent of depression and anxiety that can accompany chronic pain.
I’ve learned that managing your pain is a layered experience. It’s multi-faceted for me. Maybe just one thing won’t take away your pain. Yes, it’s diet. Yes, it’s exercise and sleeping better. Yes, it’s pharmacological if need be. Each layer can help. It’s a multi-layered scenario that arthritis patients need to know more about. I love the idea that you can focus on short-term goals through Vim, the Arthritis Foundation’s new app, which I’m using regularly to make some progress, a step at a time. Perhaps best of all, you can connect with others like you, if you wish, to share tips and cheer each other on.
Holistically, the Arthritis Foundation’s stake-in-the-ground pain management statement is a huge focus area going forward. When talking with so many different people with many forms of arthritis in recent years, I often hear them say the pain aspect is diminished or forgotten. That they’re not heard when they go to the doctor. That they’re not heard by policymakers and other decision makers.
It’s important to understand that this is an Arthritis Foundation priority. It has always been there, but now it’s being spotlighted in a bigger way. Everything about the arthritis movement must keep that pain aspect in mind. Just know that my fellow board members and I are standing up for you as the Foundation focuses on the number one complaint people with arthritis have: PAIN. I’m proud to represent you as a new national board member. And I appreciate this opportunity to make an even bigger impact on a larger stage.
Helen’s tips for living your best life with arthritis:
1.) Find your tribe
Seek people who can support you through your bad days and be there to celebrate with you on your good ones.
2.) Be proactive in your health care
Advocate for yourself. It’s not about your doctor telling you what to do, it’s about partnering and learning how to talk to your doctor to get the best outcome.
3.) Practice self-care
A lot of women are bad at putting themselves first. But it’s important to do something that feeds your soul. For me, it’s volunteering and giving back.
4.) Keep a positive attitude
We all have down days. By no means am I flying through this without getting depressed or getting tired of being in pain after 3 days of a flare. I just try not to get stuck there.