Newly Diagnosed: Control the Emotional Toll

 

Originally released June 21, 2022 | Re-released on Aug. 13, 2024

 

PODCAST OPEN:      

You’re listening to the Live Yes! With Arthritis podcast, created by the Arthritis Foundation to help people with arthritis — and the people who love them — live their best lives. This podcast and other life-changing resources are made possible by gifts from donors like you. If you’re dealing with chronic pain, this podcast is for you. You may have arthritis, but it doesn’t have you. Here, learn how you can take control of arthritis with tips and ideas from our hosts and guest experts.

 

This encore episode of the Live Yes! With Arthritis podcast was originally released in June 2022. Your host is Rebecca Gillett, an arthritis patient and occupational therapist, who is joined by others to help you live your Yes!

    

MUSIC BRIDGE

 

Rebecca Gillett:

Thanks for joining us on this newly diagnosed series of episodes. When you are first diagnosed with arthritis, it is completely overwhelming. First of all, you're learning about the disease process. Maybe it is a little bit of a relief because you finally have a name for all of that pain you've been having. But sometimes that relief comes with a diagnosis that might put you on a roller coaster of emotions, that might include anxiety, frustration, anger, maybe even grief.

 

Some of that might set in as you try to figure out: Well, what's my prognosis? And what's life going to be like? Today, I'm glad to have Dr. Francis Keefe joining us.

 

Dr. Keefe is a professor in the department of psychiatry and behavioral sciences, a professor in anesthesiology and professor of medicine at Duke University School of Medicine. He is director of the Duke Pain Prevention and Treatment Research Program, a clinical research program focused on developing new and more effective ways of assessing and treating patients who have acute and persistent pain. Dr. Keefe, thanks so much for joining the podcast.

 

Dr. Francis Keefe:

Thank you, Rebecca, for the opportunity to be here.

 

Rebecca:

Could you share with us a little bit about the research that you've been doing?

 

Dr. Keefe:

The fundamental question that I've been focusing on in my research, really for over 30 years now, is when someone has a disease where pain is a key feature, why do we see such variations in how they deal with it? Some people seem to be able to continue, to really be engaged with life. They're able to manage their emotions. While other people don't seem to be able to do that. So, my research has really attempted to look at how do we understand that.

 

Rebecca:

As a pain expert, could you kind of give us an overview, and discuss how our emotions can play into and affect our physical pain?

 

Dr. Keefe:

There isn't a formal definition of pain that is out there. But the heart of the definition is this: Pain is an unpleasant sensory and emotional experience. Think about that.

 

Rebecca:

Yeah.

 

Dr. Keefe:

it's a warning system. It is not just sensation. It's an emotional experience. Pain is a complex experience that definitely has sensory and emotional components.

 

Rebecca:

And I think one of the interesting words in the definition of pain now is experience. Because everybody experiences the pain differently. Because none of our sensory systems are the same.

 

Dr. Keefe:

Clearly, pain is influenced by your sensory experiences over life. So, it is very, very personal. I always have to kind of scratch my head when people are asked, and I'm asked to do this all the time when I go to see my doctor: Put in numbers. You're a 10 on your... Right. And I'm thinking, "What?" (laughs) The idea that you can simply give a numerical readout, and that actually is going to capture this experience, is really in some ways ridiculous. (laughs)

 

Rebecca:

If you're not asking your patients what level four pain means to them, you don't know what a four pain level means to them. Are they ever a zero? Not understanding the qualitative information of their pain experience I think makes such a big difference, right?

 

Dr. Keefe:

You sit down with a zero to 10 scale and say, "Let's talk about what a one means to you, a two, a three, a 10, and fill that in." And you can think of the rich understanding that can come out of that for the clinician and the person in pain, really feeling validated. This person really wants to know and understand what I'm dealing with.

 

Rebecca:

Yeah. That pain number includes emotions. When we're talking about arthritis, how much do those emotions play a role in our symptoms, whether somebody has osteoarthritis or inflammatory forms of arthritis? Do they play a role? And how so?

 

Dr. Keefe:

Yeah, they definitely play a role. First of all, when we think about something like arthritis, I tend to think of it as a stressor, as a chronic stressor. There's pain, there's variations in disease activity. There are the losses that you experience over time, things you cannot do any longer and so on. And we know when stress persists — initially, of course, you're getting this sort of fight or flight response — but as stressors persist, day after day and month after month, it begins to wear people down. You find people start to develop a problem sleeping. They feel fatigue a lot of the time. They feel tense. They may have a lot of increased inflammation. Then they gain weight.

 

Inevitably, as pain persists, and some of these other stressors persist, people begin to get much less active. They start to feel more irritable, more anxious about what the future's going to bring, and experience depression and other indicators of distress. It can get into a vicious cycle.

 

With a chronic, painful stressor, you're more likely to subsequently develop depression. And I would hypothesize that that would also be true for anxiety and irritability and so on. So, what we're really talking about is how people adjust to something that goes on and on and on.

 

Rebecca:

To what extent do you think that inflammation seems to be a factor in the depression?

 

Dr. Keefe:

It's certainly a factor. People with high levels of inflammation are more likely to get depressed. As a disease becomes chronic, these diseases in particular, you start to develop comorbid conditions. Because people can't be active, they put on weight. We know that obesity also creates inflammation.

 

They begin to have sleep problems. We know that disrupted sleep will increase inflammation. They may have some heart disease. That increases inflammation. In some ways, there are many, many inflammatory things going on in people, particularly with osteoarthritis, that can make them susceptible to these emotional outcomes.

 

Rebecca:

So even with osteoarthritis, you often see depression and anxiety rates higher?

 

Dr. Keefe:

Yes, that's right.

 

Rebecca:

I remember when I was first diagnosed thinking I was invincible because I was in my mid-20s. And then quickly getting that wake-up call that, "Wait a minute. You're not invincible. This isn't going away. And this is something that you have to do something about."

 

I remember those feelings of depression setting in like, "Oh, my gosh, I'm in my 20s and I can't go do the things that I want to do that all of my friends are doing because my body isn't allowing me to do that." Can you talk about that toll and how to best cope with that?

 

Dr. Keefe:

They asked Sigmund Freud: "What are the major kind of things that people have to deal with in their life?" And he said, "Really, there are two things. One is to be able to love, and the other is to be able to work." And if you think about this diagnosis that you talked about, it threatens both of those areas.

 

Can you have an ongoing loving relationship with another person? Can you sustain that over time? Can you have a family? Your identity as someone who can contribute in terms of their work is threatened. So those are huge threats. And what we know about stress, there's kind of a couple processes in the way people react to stress. And one is people make judgments about the stressor.

 

You can imagine one person saying, "Yeah, I'm going to end up in a wheelchair. And this is terrible. I'll never be able to deal with it." Whereas another person might say, "Wow, this is really bad news. It's going to be really, really challenging to deal with it. You know, I'm fortunate I have physicians, and a health care team is going to work with me. And I need to take this a step at a time, and we'll have to see how it goes."

 

With those kinds of judgments that people make in that early phase, you can imagine how that will influence emotions, emotional outcomes and behavior outcomes. I think recognizing that this judgment... The psychologists call it appraisal. When you're confronted with a severe stressor, you are making these judgments in real time.

 

One thing is: Try to drill down into it. Am I seeing it as something that's permanently harmful or a threat? Am I thinking about what I can do? Will it work? And to understand that those judgments that you're making, and if you can become aware of them, really are a key determinant of your emotional response and your behavioral response.

 

Sometimes we'll have people keep simple diary records. And they'll say, “You know, my mood is fluctuating from day-to-day.” And what we ask them to do: “OK, take time when you're feeling really down or really anxious to write down what's going through your mind. What are some of those thoughts?”

 

Step back and actually begin to look at it. And that will be give you some insight, I think, into the kinds of judgments and appraisals that you're making. That moves us into coping, what people can do for it. And I think the different coping strategies can be grouped into kind of two basic domains. One is more problem solving, like difficulty walking down the stairs. “I'm afraid to go down the stairs after there's so many people…” and so on and so forth. And you think about it and, “OK, what are my options?” And one might simply be: “I have to wait for the elevator for a while.”

 

There's a problem there, and you can solve it. But other situations you can't change.

And it brings up a lot of emotions. Some of the coping efforts that you can use focus really on managing those emotions. “What are some strategies I can use to help me manage my emotions so that I don't get so down?” And it might be doing some volunteer stuff. Things you can do in your home that you're physically capable of but that give you a sense of meaning.

 

PROMO:

Whenever you need help, the Arthritis Foundation’s Helpline is here for you. Whether it’s about insurance coverage, a provider you need help from or something else, get in touch with us by phone toll-free at 800-283-7800. Or send us a message at arthritis.org/helpline.

 

Rebecca:

When people are feeling all of these emotions, if it starts to get overwhelming or they're struggling, how should you know when to seek more help? What signs or symptoms should they or maybe loved ones be looking out for?

 

Dr. Keefe:

The real key is: Does it really start to alter your function, your daily activity? Is it impairing you and what you can do? If it gets to the point where it's really impairing your ability to do things that you're physically capable of, that's probably when you need to turn for professional help.

 

Rebecca:

And where do you look for help?

 

Dr. Keefe:

Social workers, counselors, psychologists and so on. Reach out to your contacts as well. That could be your primary care doctor or a specialist that you're seeing for arthritis. And often they know of somebody they can personally recommend that can be very, very helpful. So much of it is really dependent on your willingness to share what's happening with you, to be open, to be very honest.

 

I think that most primary care doctors and certainly most rheumatologists now understand the value of a team approach. More than likely, if you're having considerable problems, you're not only working with your primary care doctor and getting input on medicines from the rheumatologist. But you're also involved in some sort of physical therapy, or, in some cases, getting some help with emotional issues from a professional.

 

Rebecca:

What are you finding in this research that you're doing for persistent osteoarthritis pain?

 

Dr. Keefe:

You have one group of patients where you take this kind of stress and coping perspective, and really try to understand how they're dealing with it, and then systematically train them in skills for managing pain — these can be things like relaxation, activity pacing, problem solving, sleep management and so on — does that really make a difference? Does it improve their pain? What we found was that those who were given training and coping skills really did show significant improvements in pain and their psychological disability, and even some markers of physical disability.

 

In the second phase of our research, we did a number of studies involving partners of patients. So, the partners learn the same skills, and they learn to coach the patient in the use of those skills. And we actually found that that sort of joint training of patient and partner was more effective than training just the patient alone. A lot of people could benefit from this but very few people get an opportunity to do this kind of training. What we did is: We developed an online training program, pain coping skills training, and if people go on the web, they can actually sign up for pain training. They’ll have to give just a few pieces of information.

 

Rebecca:

I think a big part of what I hear from people, especially when they're newly diagnosed, or even further into the diagnosis, is that: “My family or my friends don’t understand my disease. So, including caregivers and loved ones into some coping skills trainings would be a great step.

 

I wonder: Is it really more about making sure that you actively include family and loved ones and friends in the journey instead of shutting down? It's more almost about communicating more and helping to educate. Maybe asking your partner or your loved one or caregiver to come with you to doctor's appointments. So, they can also ask questions and hear the answers. Is that something that you would recommend as well?

 

Dr. Keefe:

It's really the first step, because it's not simply understanding and getting information. We talk about a patient/partner interaction. But it's also getting involved in supporting the patient, encouraging them. Really fostering the self-help efforts on the part of the patient and so on. The communication is key. I'm sure that you know, Rebecca, talking to someone else, even someone that you know and love, about your pain is not easy.

 

Rebecca:

No.

 

Dr. Keefe:

Many of us are reluctant to share that with a partner. We don't want to burden them.

 

Rebecca:

Right.

 

Dr. Keefe:

The partners are often reluctant to ask because maybe that's going to make you more upset. There's a lot of what we call buffering, protective buffering, and people holding back. And we actually found that, if the patient was holding back and the partner was holding back, that the patient had the highest level of pain. Communicating and talking about what's going on and having a regular way to do that. And that might simply be a once a day check in, you know.

 

Rebecca:

What steps would you suggest somebody take to manage their mental health and their emotional well-being when they're newly diagnosed?

 

Dr. Keefe:

When you're newly diagnosed, it's an incredible wake-up. Simply recognizing that the emotional quandary that you may be in at that time is normal. It's probably helpful to talk to your provider or to talk to your family about the emotions that are related to this. It doesn't mean that you're in any way abnormal or have some kind of personal deficiency.

 

Often there's a lot of guilt. "You know, if I can't handle it, I must be sort of defective in some way psychologically." It's not the case. Learning a diagnosis, dealing with persistent pain, it's an emotional experience. And I think the first step is simply acknowledging that, being willing to address it and so on.

 

I think a key second step really is finding what gives your life meaning. Really sitting down, look across major domains of your life: your work, your home life, your spirituality, all the different key areas of your life, and saying, "OK, let's say I have this and it's going to go on for a while. What parts of this are really important to me?"

 

It is a threat when you get this diagnosis. It's a threat to your identity and kind of who you really are. What really gives your life value and a sense of meaning and makes you feel really worthwhile? And then trying to weave everything that we do around coping and so on around that effort. And it just opens up a space. I find that patients sort of really brighten up, and they begin to step back and say, "Wait, you know, even if I have pain, there are things I can engage with in life that really do still make it really important and meaningful. I might not be able to do as much as I did before or in the same way, but there are things that give my life meaning."

 

The third area to think about is how to manage setbacks and times when you're kind of overwhelmed. Helping people plan for those. To say, you're going to have flares and disease activity. You're going to have times maybe you get quite a bit of joint damage and you need to have a joint replaced, or some type of surgery on a joint or whatever.

And people feel like, “I’m never going to be able to function again.”

 

Anticipate that those things are going to happen, to have a plan for dealing with the emotions. Because emotions often will kick in at that time and may lead you to stop things. “OK, now that I got a joint replacement, I'm not going to exercise.” Whereas your therapist may say, “You know, one of the things you really need to do after this replacement is get back on that exercise program.” I think understanding and having a plan to deal with those is incredible.

 

Rebecca:

I think one of the most emotionally validating things for me in my journey with arthritis almost 20 years was finally meeting somebody who also had rheumatoid arthritis. How important do you think it is to be able to connect with people who truly do walk in your shoes and understand your journey?

 

Dr. Keefe:

It's extremely important to feel that you matter to others, that they understand, and they're not going to just say, “OK, don't worry about that. You know, let's go ahead and change that.” They're actually going to validate, “Yeah, it's understandable that you'd feel that way,” and so on.

 

PROMO:

The Arthritis Foundation is always looking for new ways to inform you about the things you want to know more about. Check out our webinars — in real time or on demand. Visit arthritis.org/webinars to learn more.

 

Rebecca:

Which brings me to our listener segment of the podcast where we asked a couple questions on social media and had some listeners respond with some comments and suggestions for people who are newly diagnosed. And one of the first questions we asked was: What kind of emotional toll did you experience being diagnosed with arthritis? And a woman named Bertha said that it was still so very new to her, hurting all day, every day, but she just keeps continuing to move as much as she can, even though she doesn't feel like fighting.

 

Another one from Lauren was: She was diagnosed two years ago already, but still hasn't fully come to terms with it. And sometimes it's hard to stay positive when you know this will be a lifelong battle. Are there any strategies that you can suggest for people who might feel that way and they're recently diagnosed?

 

Dr. Keefe:

One thing is kind of be patient with yourself. These are not things that you can kind of quickly decide and get over. I think doing a kind of inventory of what gives your life meaning is really, really important. I think this sort of inventory can be really helpful. And people often have the “aha” moment. And then they start to shift around and build things into their life that help them sustain those things that really are important to them.

 

One of the things that might be happening early on for someone is that there are areas of their life other than work, and maybe some areas where they don’t even have losses, but other areas that really give their life meaning that they're just not spending a lot of time. It could be the arts. It could be reading. It could be a variety of things. And it makes them feel whole and valued. If you have something as impactful as a diagnosis, and you're kind of really struggling, particularly with identity issues, I think that's a really good time to do this inventory.

 

Rebecca:

I like that suggestion. Cassidy mentions that she went through the grief cycle but didn't know it until she came out of it. Something I talk about a lot that, not just at diagnosis but throughout the diagnosis journey, I feel like you go through the cycles of, the stages of, grief a lot. You could be going through several of the stages at the same time. But you don't realize, like she says, until after you've gone through it. Like, “Oh, wait a minute. I was angry. And I was in denial about the diagnosis, and now what's next?”

 

Dr. Keefe:

It doesn't feel good to be going through those stages. But in fact, that may be positioning you to be in a space where you can say, “OK, I've got this. These changes are going to occur. Now, what can I do?” It's almost allowing yourself to have those emotions, to think about what they're related to. And then, “OK, that's where I am,” and then being able to move on.

 

Rebecca:

I think recognizing how you're feeling at different points and labeling it, giving it a name, actually helps you get through it, right?

 

Dr. Keefe:

It does.

 

Rebecca:

Some of the strategies that people offered were, you know, there’s still life to be lived. Just hang in there, right? One said: "Be thankful that the medicines available now have come a long way." He was diagnosed when he was 8. It's 50 years later. He has juvenile RA, persistent into adulthood, and ankylosing spondylitis. But hopeful, because the medicine and the sciences have come such a long way that it's actually better today than it was when he was a kid, right?

 

Dr. Keefe:

Yeah.

 

Rebecca:

One thing that I think is powerful that somebody shared was: “Do your research. Knowledge gave me some type of power over it.” How does knowledge help empower us to feel like we do have control?

 

Dr. Keefe:

Well, it gets back to those judgments I talked about. When you have knowledge, you're much less likely to say, “Oh, this is going to totally destroy me,” whatever. You're much more likely to say, “Yeah, this is a challenge that people have recognized.” You know, scientists know about it. It takes away some of the threat value, I think, in getting you ready to change. A lot of the things that I've talked about in terms of coping, they sound very easy (laughs) to sit here and say them. But to actually implement them, you know it's not easy.

 

PROMO:

Get tips to help you take control of arthritis and put your mind at ease with the Arthritis Foundation’s free e-books. They’re packed with trusted information from the experts on all kinds of topics. See the full menu at arthritis.org/ebooks.

 

Rebecca:

Well, Dr. Keefe, thank you so much for joining me on this episode to talk about the emotional toll of arthritis. I wonder if you can share with our listeners what your top three takeaways for newly diagnosed with arthritis, for people who are struggling emotionally or mentally.

 

Dr. Keefe:

I think we sort of touched on these before, but one would be to recognize that emotions are integrally related with the experience of arthritis, particularly the pain component. I think the second is to focus on the things that give your life value and meaning. Really pursue those things, make time for those things in your life. It may not be as important at other times in your life but, after diagnosis and in the early stages of dealing with arthritis, it's extremely important.

 

And then the third is to understand these are chronic conditions. There will be ups and downs. There'll be setbacks. There'll be relapses. And rather than be surprised by those, plan for them. Have a plan to manage them and particularly manage the emotions that go along with them so that you don't get caught in some kind of setback that leads you to problems that really complicate your arthritis and its management.

 

Rebecca:

Thank you so much for those top takeaways. That's a great way to sum it all up. And I think the last message I'll leave you with if you are newly diagnosed is you are not alone. If there is anything that I want to make sure people remember in an initial diagnosis, it's that you are not alone. And connecting with others like you, whether it's online or through support groups, I think is very important to get you through this journey. So, thank you, Dr. Keefe, for your knowledge and your suggestions.

 

Dr. Keefe:

Thank you for the opportunity.

 

PODCAST CLOSE:

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