The 2023 American College of Rheumatology (ACR) Convergence conference was held in November in San Diego, CA, with approximately 13,000 health care providers, clinicians, researchers, and patients from all over the world in attendance.
When you live with a chronic disease, you know what it’s like to ride the roller coaster of emotions as you navigate your journey with your diagnosis. Some days may just suck the life out of you, while others can bring you little victories to brighten your day. But always, there’s an underlying feeling you have that will ground you and bring you to a more practical state of being. You know things can change on a dime. But how would you label that?
Increasing new evidence supports the idea that there is a bidirectional relationship between mental health conditions and rheumatic conditions. Approximately 62% of adults with rheumatoid arthritis (RA) have either anxiety or depression. But what does a bidirectional relationship mean?
“Not only is it hard to have a physical condition, but that emotional state might impact your disease and they might be working together to create pain, functional limitations,” said Courtney Wells, PhD, MPH, LGSW, who was diagnosed with juvenile rheumatoid arthritis (JRA) in 1985.
In a presentation at the American College of Rheumatology’s (ACR) annual meeting in November 2003, Courtney and I were able to share our theory that what many patients experience is grief. Many do experience anxiety and depression, but what does not get discussed is the grief a patient may feel. In some situations, it may be grief and not necessarily depression.
Courtney and I became connected through volunteer work in the arthritis community and instantly bonded. She was a guest on the podcast I hosted a few times because we both feel strongly about this topic of grief in chronic illness and how important it is to address mental health. Presenting this topic at the ACR conference to rheumatology researchers and clinicians was a highlight for us, as it gives some credence to this idea that patients experience grief and brought awareness to the rheumatology community.
Grief means loss. Loss means having something meaningful taken from you. It could be the death of a person you love, but it doesn’t have to be, Courtney suggested. The typical stages of grief that most people know about are denial, anger, depression, bargaining, and acceptance.
These stages were not meant to be linear. You can experience more than one of these emotions at once and move in between them. Grief is a process, not an emotional state.
“It could be the death of your functioning. It can be the death of what you thought your life was going to be like, or your childhood,” explains Courtney. “I spent most of my childhood in the 80s in the hospital. I didn’t have a normal childhood. So, I have a lot of grief about that. There’s a lot of losses that come about when you have a chronic illness and a rheumatic disease because a lot of things are taken from us.”
I shared my journey since my RA diagnosis and all the little and big moments where I experienced grief. It’s not just at initial diagnosis, but with every loss of identity I experienced with who I thought I would be, the kind of mom I envisioned myself to be, the loss of using my dominant hand. All these losses bring some sadness to contend with for a period of time, but have not necessarily meant a period of major depression.
Courtney explained the different types of grief we can experience in our lives. There’s uncomplicated grief (“normal”, healthy, protective), acute grief (experienced closely after a loss), integrated grief (healthy balance and integrated with life), ambiguous loss (experience a loss not related to death), and anticipatory grief (loss over something that has not happened yet but could).
Courtney discussed a new diagnosis called prolonged grief disorder, also known as complicated grief. A person may get stuck somewhere in the process and they can’t seem to get out of it, and it keeps going on. With this type of grief, professional help is needed, and this may or may not be connected to depression.
“Ultimately what we hope for people is that they have what’s called integrated grief. And that’s where they’re not completely overwhelmed by it. It hasn’t lasted indefinitely, but they are able to move in and out of it,” explained Courtney. “They might have waves that come up and down, but they are able to integrate it with the rest of their life. They’re able to function, they’re able to still have these moments where they feel overwhelmed, but they can quickly regulate themselves and go back to functioning.”
That’s why we called our presentation: “A Thousand Tiny Deaths” because that’s what it feels like for us. It’s an accumulation of a bunch of small (and sometimes big) things that we have lost throughout our journey.
With each “no” and each “I can’t” you’re faced with, comes feelings of grief. These moments can happen at multiple moments during the day as well as throughout various points on your journey.
But how do you distinguish between grief and depression in chronic conditions? Grief might look like depression, but they are two unique conditions that have different types of treatment.
“The big difference between depression and grief is with grieving, they care a lot about their loss, they’re trying to hold onto something, whereas with depression, they are more detached and may feel numb,” says Courtney. “They can be difficult to differentiate, so that’s why having a professional to help distinguish between the two is important.”
She shared research from a systematic review of physician-patient communication in rheumatology visits with adults found higher levels of trust in the physician and patient participation being linked to lower disease activity, better global health, and greater treatment satisfaction, and more positive believes about control over the disease. This research stressed how having a trusting relationship between the physician and patient can have a tremendous impact on their physical health.
Natalie Datillo, PhD, MHA, a clinical and health psychologist, cognitive behavior specialist, and instructor at Harvard Medical School, provided some suggestions for attending to grief in patients, highlighting communication and empathy as being key. Patients want others to understand what it feels like to experience what they are going through. Datillo suggests the most important thing providers can do is to actively listen and let people know you’re there to help, check back in, and follow up to see how they’re doing.
I shared the sixth stage of grief, developed by author David Kessler a few years ago, called Finding Meaning, which is also the title of his book explaining this stage. Beyond acceptance of our loss, we strive to find meaning in our losses and this meaning can be in the little things we experience daily or in the larger milestones of life. But finding meaning is what helps us to better understand our losses and helps us get to the other side.
What I have learned in my RA journey as it relates to attending to my own grief is this: you must sit with it. You have to go through it, as painful as it may be, the only way out is through. Recognizing your feelings of sadness and grief takes time. You need validation for yourself and from others that you are experiencing loss and it’s OK to be sad.
I think being able to name and label these feelings I was having for so long as actual grief has made a huge impact on my ability to manage it and find meaning. Once you get to a point of knowing your grief, understanding, and accepting it, then you can find the meaning behind it in the big and little things. This helps you to build resilience.
Both Courtney and Dr. Datillo were part of several episodes I hosted on the Live Yes! With Arthritis podcast, discussing grief and mental health. If you want to hear more about this topic, definitely tune into Grief and Chronic Illness with David Kessler, one of the leading experts on grief. It’s probably my most favorite episode I have ever done.
Speakers at this ACR presentation:
Courtney Wells, PhD, MPH, LGSW, is a social work professor and researcher at the University of Wisconsin-River Falls. She was diagnosed with juvenile rheumatoid arthritis in 1985. Her work focuses on emotional challenges during the transition into adulthood for people with chronic conditions.
Rebecca Gillett, MS OTR/L, Insight Wellness, LLC, is an occupational therapist, consultant and educator who specializes in rheumatology training for other rehab professionals as well as patients. She was diagnosed with rheumatoid arthritis in 2001.
Natalie Datillo, PhD, MHA, is a clinical and health psychologist, cognitive behavior specialist, clinical supervisor and trainer and instructor at Harvard Medical School.
