In August 2019, the American College Rheumatology (ACR) updated their treatment guidelines for spondyloarthritis (SpA), which included physical therapy (PT) as a first-line therapy for both active and stable disease. This meant that if you have SpA and are cleared by your doctor for activity, physical therapy and exercise should be one of the first, and most critical, elements to your treatment plan.
Many of us are already incorporating some form of movement and/or exercise into our days. “Use it or lose it” becomes especially poignant for us within the SpA community, and I’ve heard countless stories of how beneficial exercise can be in managing symptoms, as well as personally helping to keep my own symptoms at bay (side note: every time I hear this quote I’m reminded of Andy from The Virgin, and I realize that I just outed my millennial stripes with that admission).
But what about physical therapy? Have you ever found yourself asking the question, “What do physical therapists actually do and how might they help me?” When I had the opportunity to visit the Combined Sections Meeting (CSM) hosted by the American Physical Therapy Association (APTA) this February in Denver, I learned that there’s a lot of misunderstanding, even among physical therapists, on what exactly they do and don’t do. Phew, we’re not alone.
First, a Confession
Recognized as the largest physical therapy conference in the country, CSM brought together over 18,000 people into 350 specialty-specific sessions over several days. But, as you may have guessed, I’m not a physical therapist. I’m a patient with a lot of questions who has been around the block a few times, on both the receiving and delivery side of healthcare.
So why attend? In my conversations with other SpA patients, their experiences with PT have been hit or miss, which mirrors my own personal experiences over the years.
Perhaps the program is too aggressive, demanding predictable progress in the face of our unpredictable bodies deciding, “Sorry, not today.” Or perhaps therapy does provide relief, until insurance ceases to cover additional visits – and for what seemed so promising in the beginning, one must now decide to either pay out-of-pocket to the tune of $150 per session on average, or continue onward by themselves without this treatment. For many, particularly those with chronic illness, cost is a driving factor in healthcare decisions.
There are many factors at play that make it difficult to see the benefits of PT. Part of the challenge is finding a clinician experienced with chronic illness, but as I soon observed, some of the largest obstacles are systemic to how our healthcare system views and treats patients with chronic illness more broadly.
Alone, But Not Lonely
Physical therapists undergo a demanding program where they learn about the structure of the human body, how it should move, what happens when things go awry, how to fix it, and also how to prevent the onset and worsening of symptoms. After three years, they emerge with a doctorate degree which allows them to go forth into a variety of specialties in many settings, from hospitals to outpatient clinics, schools and homes. Regardless of their setting, they are valuable in supporting healthy lifestyle changes through tailored movement and exercise programs.
This freedom of choice allows them to hone their expertise in areas such as pediatrics, sports, orthopedics, and geriatrics, to name a few. In total, there were 19 different sections at the conference which represented these various interests.
Chronic illness was not among the list of sections. To be fair, a few sessions did touch upon patients with chronic illness, but always in the greater context of another discussion, mostly with regard to geriatrics or neurology. Neither am I of geriatric age (although sometimes my body would argue differently), nor do I have a neurological condition that I am aware of. In a sea of people exceeding the population of many small towns, I felt oddly alone.
But was I? Depending on where you look, SpA is represented in about 2.7 million people in the U.S., more than rheumatoid arthritis, multiple sclerosis, and ALS, combined. Further, 6 in 10 Americans have at least one chronic disease, many of which are preventable through lifestyle modifications such as, you guessed it, exercise. The numbers don’t lie, but my experience told a different story.
Why the discrepancy? Our healthcare system in the U.S. has been designed as a sick-care system. Though often said tongue-in-cheek, it does represent its original intent – people get sick, they get healthcare, and they get better.
Therefore, PT has historically focused on rehabilitation. Think acute injuries, like recovering from a shoulder surgery or a torn ligament. This system serves generally healthy people, befallen with an injury that would require only a handful of visits before being sent off into the world to self-manage as they naturally recover on their own.
With a general focus on acute conditions, chronic illness starts to feel like putting a round peg into a square hole, despite growing numbers worldwide. Autoimmunity adds even more complexity. We require a different clinical approach, and because each of us has a unique constellation of symptoms, there is no one-size-fits-all solution. We are all special snowflakes in a blizzard.
Evolve and Adapt
But eventually the snow stops, settles, and we’re able to see clearly again.
The way we experience health is deeply personal and highly contextual. Few would disagree that keeping people healthy is preferred over waiting for them to get sick. The U.S. healthcare system is now changing to accommodate what we already know intuitively, moving away from reactive to proactive models of care, with greater emphasis on wellness and prevention, as well as treating the whole person, integrating all of the factors – whether they are physical, mental, emotional, or social.
During the conference, I spoke with hundreds of therapists, several of whom are recognizing these unmet needs and are either intending to offer or already providing additional services that they know will help their patients through prevention, health promotion, and wellness. This bodes well for those of us with chronic conditions, because as we know, physical pain is only one facet of our experience.
In speaking with students, SpA is currently being discussed in their classrooms, and many are being encouraged to think of prevention, health promotion, and wellness not as not add-ons, but integral to their professions. They are learning to incorporate diet, nutrition, stress management, and sleep into their model of care.
Present Company Not Excluded
As patients, we must also be ready to evolve our own care practices and teams. The current state of approaching physical health and wellness is typically trial and error, fumbling through exercises, diets, stress management techniques, and strategies for better sleep. If we’re lucky, we discover a protocol that keeps all the plates spinning until the nature of our symptoms change, and we are put back on the treadmill of re-adjusting and re-inventing. Physical therapists have an important role to play in how we incorporate exercise and movement into our lives, and as we’ve seen, potentially other areas of wellness too.
We are already agents of change and have the capacity to begin making adjustments, however small, towards better health. I’ve learned to embrace this part of my journey and hope that you will too. Our bodies are working so hard to support us, and we can respond by growing in our partnership and love towards them. You may already have a small army of clinicians at the ready. Perhaps it’s time to consider inviting a physical therapist to join the ranks.
What You Can Do Right Now
- If you have a great physical therapist, share your story! Post a comment or send me an email at email@example.com.
- If you don’t have one, consider checking out local physical therapists using APTA’s Find A PT tool: https://aptaapps.apta.org//APTAPTDirectory/FindAPTDirectory.aspx. Often, they will provide a free initial consultation.
- Keep moving. However you can, as frequently as you’re able. Get out in nature, do it with others if possible. Set goals for yourself, and listen to your body along the way. Rest if you need to. Your body will thank you. But keep moving. There are many exercise-related resources available, including SAA’s “Back In Action, Again” exercise video: https://spondylitis.org/resources-support/educational-materials-resources/back-in-action-again/.
- Cultivate your clinical team. Physical therapists are experts when it comes to movement and exercise. But they are not replacements for our primary care physicians, rheumatologists, or other clinicians on our team. Health requires a group effort and should be integrated into a plan that addresses all aspects of our wellbeing. Some of us have been able to successfully build our teams around us and are better for it. It’s not easy but it is worth it.
- Don’t go it alone. I’ll admit, it can be easier to just carry on and sometimes that can be the best expression of self-care for ourselves at that moment. At the same time, as an SAA support group leader, I’ve seen firsthand the power of shared experience. Whether it is through family, friends, colleagues, a religious institution, or your local support group, find others you can connect with and live life alongside of. If you do consider joining a local support group, the list of local chapters can be found here: https://spondylitis.org/resources-support/support-resources/support-groups/.