Editor’s note: Billie Jo Bogden is a patient advocate with a long history of living with pain, including from multiple sclerosis (MS), fibromyalgia, and complex regional pain syndrome (CRPS). She champions innovation in pain medicine, better education, and collaboration with academics, researchers, healthcare professionals, and community leaders. She was also the co-founder of a chronic pain patient group called the Patients of Eastern Ontario Pain Lifestyle Education (PEOPLE) Centre in Ottawa, Canada. In this RELIEF interview, Catherine Paré, a PhD student at McGill University, Montreal, Canada, asks Bogden about the effects of the COVID-19 pandemic on people with chronic pain and the challenges of managing pain during this difficult time. Below is an edited transcript of their conversation.
As someone who lives with chronic pain, how have you been affected by the COVID-19 pandemic?
At first, I was most stressed about jumping through the hoops of getting a prescription renewal. I do not have a pain doctor, and having your prescriptions renewed is very different when you’re with a family physician than with a pain clinic. Getting a prescription, figuring out whether my insurance would pay for it, dealing with cancelled appointments, and trying to find out how to get things done in the context of COVID-19 – these are challenges to overcome.
When you’ve lived with chronic pain or a chronic illness for a long time, you may have limited income and might not have access to a credit card, but to get prescriptions delivered, you need to pay with a credit card. The only other option is picking up your prescriptions yourself, but I can’t go out in public because I’m on immunosuppressants, as are many people with chronic pain. While the regulations for prescribing narcotics were really well intended when they were implemented, they are creating huge headaches for people with chronic pain in the context of pandemic. That part was hard, but I’ve managed to figure out most of it.
Now, it’s just being in the limbo of wondering what this situation means and how long I have to stay in my house. I think everybody feels that way. When this pandemic is over, we need to take a careful look at our emergency measures. In Canada, there was a tornado in Ottawa in 2018, fires in Fort McMurray, and flooding last year in Quebec, so it’s always possible that there’s going to be an interruption in services. But this time, it’s on a national scale and people are paying attention, now that they recognize the challenges.
These difficulties with prescriptions, and also the uncertainty – are these also the biggest worries of other people you know who deal with chronic pain? Or are there other concerns that you’ve heard about?
A lot of the work that I do focuses on helping people who are suffering from chronic pain through their panic to solve problems with their doctors. Right now, patients are all experiencing some kind of breakdown in communication with their healthcare providers. They are struggling with having many of the tools from their toolkit taken away all at once without being given a coping strategy to manage their pain.
I’ve been coaxing them through the anxiety of their pain being worse and helping them to understand the link between stress and pain. I’ve spent a lot of my time walking the patients through what they can do, what they can control, and what they can’t control. I tell them to worry about the things they can control and, for the things they can’t control, they should try to take their mind off of it by doing things like watching happy videos.
What are your thoughts about the importance of managing mental health, not only during self-isolation but also in dealing with increases in pain and the media coverage of the pandemic?
Mental health is more important now, in this context, for the management of pain than it has ever been. I think that managing your mental health is the only way that people with chronic pain can get through the pandemic. It comes back to those things that you can control and the things that you can’t; one of the things that you can control is how much you think about your pain or the pandemic. For me, I have to make a conscious effort to stay positive because otherwise it’s a downward spiral. But it can be difficult to do that, especially when you think of all the people with chronic pain who can’t have their elective procedures now.
The challenge is that everybody needs mental health support now. So maybe the focus should be on supporting the most vulnerable people. For example, we know that people with chronic pain and substance use disorders are at their most vulnerable to misuse medication when they feel out of control or have too much time on their hands. So right now, we should be getting out the message to everyone – to health professionals, policy makers, chronic pain patients, and organizations that support individuals living with pain – that the street supply of opioids is even less safe now than it was six months ago, in order to protect those most vulnerable.
Another problem is that the phone numbers that are available on most public health websites for people to call to access mental health resources are all 1-800 numbers. There are many problems with this: many of the people are new recruits, they’re receiving a huge volume of calls, and the amount of time that they can spend on anyone is really limited.
Have you seen any shifts in the pain patient community?
I don’t know if I would say shifts, but I’ve seen a pattern that I don’t particularly like. A more negative narrative, focused on frustration with the way that the CDC [US Centers for Disease Control] handled the opioid crisis compared to how it’s handling the pandemic, has started to dominate all of the patient platforms. To have doctors come on TV and talk about how they need to get fentanyl right now because people with COVID-19 need it – that’s triggering for patients with chronic pain who have been through so much and who were denied opioids.
That narrative is starting to dominate all of the online patient platforms, but most of them are dominated by content coming from America. That content is not very healthy right now. The US president is very different from our prime minister, and the response in the United States is not the same as the response here in Canada. We don’t have to deal with this frustration about the president and the response to the pandemic the same way up here in Canada, but for the pain patients in the United States, I get it.
What else are you concerned about in terms of pain management during the pandemic?
I’m worried that people are going to check out, to harm themselves out of desperation, if they don’t get timely assistance and support. What’s considered ‘elective’ now is any procedure that isn’t imminently or immediately life-threatening; anybody’s procedure can get cancelled, even heart procedures and cancer surgeries.
I’m going to use an example of a lady in my community who has been on a list for two years for a hip replacement. When elective surgeries were cancelled, so was her hip replacement. She was given absolutely no direction about when her hip replacement will be rescheduled – just an automated voicemail saying her procedure had been cancelled. She lives with a son who has diabetes and a husband who is desperately ill, so all three of them fall under that vulnerable category. They’ve all lost their jobs and they should all be self-isolating, but they can’t. They don’t have the community support to help them so that they can stay home. When I think of this lady, it scares me because there’s only so much that some people can take. It scares me that without the proper resources, without some kind of lifeline, these people will decide that it’s easier to check out and give up.
I’ve got another patient who had a breast implant rupture because of a genetic issue. Her surgery wasn’t cosmetic; she can’t stand the pain of living with the rupture. But now, her surgery to fix it has been cancelled for I-don’t-know-how-long. At the same time, I just got her a new doctor, who wants to talk about cutting back her pain medication. I understand why the doctor wants to visit the dose but doing it in the middle of a crisis is not going to help this patient. But she’s a family doctor, not a pain doctor, and a very young doctor with probably limited exposure to pain patients. Normally I could help coach the doctor to see the bigger picture, but I can’t do that in the middle of a crisis. There’s nothing I can personally do, except create awareness about the thousands and thousands of people who have just had their procedures cancelled.
Since we’re talking about surgeries, which can’t be done remotely, what do you think about tele-treatment?
It’s long overdue! There are patients who travel two hours for their physiotherapy treatment, or just for counseling appointments or getting a prescription refill. So I’m thrilled that tele-treatment is now an option, and having it forced upon us might open the door to do more online interventions like physio programs even after COVID-19.
You’ve talked a lot about how the lives of patients have been made much more difficult and stressful throughout the pandemic. If we inject the perspective of the healthcare professionals who are trying to care for patients, is there anything that can be asked of patients, within reasonable limits, to help their healthcare professionals help them? Or are patients already doing everything they can?
I’ve seen some fabulous examples of doctors rising to the challenge, such as physicians who make a point of sending a refill reminder for every single one of their patients without their patients having to ask for it. It’s a simple little thing, but it tells your patient that you might be at home and I might not be able to get to you, but you’re not forgotten.
Thinking about the problem the other way around though, I tried to be proactive and talk about these issues. I just don’t think that doctors or patients have a whole lot of answers. If patients knew that the pandemic was only going to last two weeks, they would have sort of a set idea of what they need from their healthcare professionals and wouldn’t need to be proactive. If you’re telling patients that this crisis is going to last for two months, then they’ll do the math and they’ll figure out, ‘okay, so I should probably call ahead to see about this procedure or that procedure’ – they can be a little more proactive.
The hard part is that everyone is dealing with uncertainty, and our politicians are making up their response to COVID-19 on the fly. If the government said that everybody who is part of the vulnerable population should plan on staying at home for six months, then we would all know how we could help our doctor. We could plan exercise programs, using Fitbit Premium, for example, which is free for 90 days. If the crisis will only last two weeks, you can sit on the couch and binge eat for a while but if it’s going to be six months, then you need to get a plan. Instead, we don’t know what to expect until it shows up on the news, and then both doctor and patient are caught off-guard. People are only starting to realize now that this isn’t a one- or two-week thing; it could be a one-year or a two-year ordeal. Once we have a better idea of how long we need to stay hunkered down, that will inspire more of us to take a proactive approach to managing our pain.
To expand on the problem of uncertainty, how can leaders in the pain field – whether they’re researchers or clinicians or policy makers – reduce the impact of COVID-19?
The leaders in the pain field need to know that now’s not necessarily the time to be discovering new strategies, but rather the time to get all the information that we already have out there to patients. We need helpful, useful reminders about pain-related information, such as information about behavioral therapy, pain medicines, alternatives to medicines, and how our habits impact our pain. We might already know that we need to exercise, but being stuck at home means you need to, for example, compensate for not being able to walk to your doctor’s office and back again. On the news this morning, all three of the anchors were talking about how everyone is consuming more alcohol. But, for the people that I represent, it’s probably not a good thing for them to drink a little bit extra. Everybody also wants to eat sweets right now, but maybe we need to remind people that sugar has a negative impact on pain. Sometimes, it just takes someone laying it out for you that starkly to help you get through the next six months.
The worst thing we can do during the pandemic is nothing. Many years ago, in my worst hour, I reached out for help and nobody called me back. That can’t happen for the people who are suffering now. We need to have the information out there, front and center: this is where you call, this is what you do if you need help, and this is how you can help yourself get through this. The pandemic isn’t going to last forever. We’ll get through it together. We’re a community, the Canadian national pain strategy is still there, and positive messaging reinforces the things that the pain community has been working on.
That’s a really good reminder that we don’t need to reinvent the wheel here. If I can end with two personal questions, what’s one tip you have been using for coping with the changes brought about by COVID-19? And what’s something that you look forward to post-pandemic?
One of the things that I have taken to doing to cope with the pandemic is TikTok; my son introduced me to it. I’ve been trading hilarious TikTok videos with my four kids because I can’t see any of my kids, so I look for the hilarious videos to send them each day, just to brighten their day. I know it’s important that I work to keep my spirits up so that I don’t get depressed, because it’s depressing living with chronic pain sometimes. It takes an effort, but it makes a big difference in the long run. And it’s not just lifting my mood – it’s getting the reaction of my kids at the end of it.
What am I looking forward to most? I really, really, really badly want to take a walk during the day. I take my walks at nighttime because nobody’s out at nighttime, and even then I have to be very careful about social distancing. I’m looking forward to flowers and being outside during the day – it’ll come eventually. But most of all, I’m looking forward to hugging and spending time with my kids.
Catherine Paré is a PhD student at McGill University, Montreal.