Mental health can become a concern for patients with chronic conditions such as peripheral neuropathy. During recent months when the pandemic has disrupted many of our usual routines, mental health for patients and their families can become even more of an issue. The Foundation for Peripheral Neuropathy asked two experts on the subject for their views on the current state of mental health for patients with peripheral neuropathy. Dr. Shannon O’Neill and Dr. Pojen Deng from Mt. Sinai Hospitals in New York shared their observations and recommends with us.
1) Could you elaborate on the connection between peripheral neuropathy (or other chronic illnesses) and mental health?
Dr. Deng: Peripheral neuropathy affects our sensory system, which is one of the critical systems involved in how we experience the outside world. It directly impacts how we feel navigating the outside world. Deficits to our sensory system, often times caused by peripheral neuropathy, can in particular be very insidious because we don’t typically think of our sensory systems as playing a role in helping us understand our experience in the world, but it very much plays a crucial role. Imagine suddenly losing your vision – that would fundamentally change how you experience life, and change how you think of your own identity. Deficits and injuries to our sensory system have a similar although more subtle effect.
When we have trouble experiencing the outside world, our brains have to work that much harder to make up the gap. This directly negatively impacts our mental health. It’s more taxing and more effort in order to engage in simple daily things, and all of these factors combine to weigh negatively on our mental health.
2) How does mental health influence how we experience pain, particularly neurological pain?
Dr. O’ Neill: Neuropathic pain is shown to be associated with higher emotional distress and worsened quality of life. Naturally, each individual experiences pain in a uniquely personal way that is affected by physiological, psychological, and social factors. These factors may play a critical role in the development and maintenance of chronic pain.
The interchange between physical (pain), psychological (cognition and affect), behavioral, and social influences helps to explain the variability between individuals and their reports of pain. The onset of chronic pain often leads to a decrease in activities, which leads to physical deconditioning. Dealing with constant pain may also lead to negative thoughts and emotions (e.g., depression). These factors contribute to increased avoidance of family and friends, and anything that involves movement. This combination means more distress and disability, leading to increased pain.
3) Is there a connection between mental health and our current pandemic environment?
Dr. O’Neill: A change in behavioral structure (or lack thereof) can begin to dysregulate us emotionally. The pandemic has forced us to alter our way of life and make significant sacrifices that mimic symptoms of depression. We were instructed to stay indoors, social distance, and limit extra-curricular activity. This disruption in our life resulted in behavior often seen within those suffering from depression (e.g., isolation, sedentary activity, inability to engage in once pleasurable activities, etc.). When we behave in ways that mimic depression, naturally our emotions will begin to reflect this as well. Moreover, the uncertainty and every-changing rules, and juggling multiple life roles can result in significant anxiety.
Dr. Deng: I think there is unfortunately an overwhelming amount to say here. I’ll just start by indicating that I think, for many people, the pandemic environment has been a form of isolation and forced quarantine which can be tremendously detrimental on everyone’s mental health. There is a clear and consistent evidence that depression, anxiety, substance disorders, are all mental health problems which have been worsened in the past year.
4) Are you seeing more mental health implications for PN patients during this pandemic age?
O’Neil: Often with PN, it takes significant effort to maintain a healthy quality of life. It would not be surprising for those managing PN to further struggle during the pandemic. If one’s external world is already greatly reduced due to neuropathic pain, having activities decrease further would result in increased pain levels and mental health distress.
Dr. Deng: Absolutely. Being able to practice navigating the world is an integral component of recovery for patients with peripheral neuropathy, and being trapped indoors for extended periods of time is particularly distressing. In addition, I think it will likely led to an abrupt change when the world does return to a semblance of normalcy, which will be particularly challenging for those with peripheral neuropathy and thus have implications for their mental health.
5) Are there differences in mental health implications for patients who have had COVID-19?
Dr. O’Neill: What I have seen in patients who have been on the mend from COVID-19, is the importance of patience. There are several long-haul symptoms, such as significant fatigue and weakness. An important reminder: focus on what is in your control, which includes your behavior. It is important to engage in physical rehabilitation to the best of your ability in order to booster positive emotions and influence healthy thinking patterns.
Dr. Deng: Many – we’re starting to understand more and more the myriad of short term and long term neurologic and psychiatric symptoms that can emerge or be amplified after COVID-19 infection. In addition, it is also clear that many patients with post-COVID syndromes are experiencing a range of peripheral neuropathy issues, including dysautonomia, immune mediated nerve injury, in addition to adjustment disorders, depression, and anxiety. Mount Sinai is one of the academic centers leading research and clinical post-COVID care, and if you think you might be experiencing any such symptoms, don’t hesitate to seek help.
One aspect of mental health implications that I will focus on is that under most circumstances, when we are sick, we are surrounded by caretakers, loved ones, and people who are eager to support us and await our recovery. COVID-19 has stripped all of that away – not only are those closest to us unable to be at hand to help support us, but even providers and clinicians are forced to don protective equipment which can extinguish the sense of human connection so important to the healing process. This makes it all the more challenging for everyone involved, and has profound implications on mental health.
6) What are the symptoms of good mental health? How can I recognize mental health issues in myself?
Dr O’Neill: From a psychological perspective, the cognitive behavioral model emphasizes the complex link between cognitions, emotions, and behaviors. All of these variables interact to help/hinder our response to our environment. If negatively fueled, this model may create undesirable experiences. If you begin to notice mental, physical, or behavioral signs that are uncharacteristic of you, it would be helpful to ask yourself “Why am I acting or feeling this way?” Usually, this will trace you back to the triggers/stressors in your life that can be modified.
I would encourage everyone to assess behavioral engagement in your life. Are you isolating or engaging in activities you enjoy? If feeling depressed, a common technique is behavioral activation, which is simply scheduling positive activities/connections in life to influence a positive emotional response. Healthy behavior, even if modified because of pain levels, is helpful in generating positive emotions and cognitions.
Dr. Deng: Be cognizant of how much time you are devoting to taking care of yourself, doing things that you mentally enjoy and find relaxing, and staying connected with those close to you. Exceptionally challenging situations often encourage us to unconsciously develop “fight or flight” mode mental frameworks which can help us in the short term survive difficult circumstances, but in the long term have serious negative implications for our stress levels, stress management. Working from home in addition can blur the boundaries between our work life and our home life in ways that amplify stress and anxiety. We can quickly find ourselves more and more withdrawn, irritable, losing interest in our passions, sleeping poorly, or restless, which should indicate that we need to take care of ourselves and our mental health.
Symptoms of good mental health: feeling able to feel full emotional ranges, both good and bad, while remaining grounded and safe, able to go about our day to day, strive to accomplish our goals in life, develop meaningful, loving relationships with friends and family, and knowing that we are capable, independent, and successful individuals.
7) What can I do for myself and my family to encourage good mental health? How can I interact with my family during these difficult times to encourage good mental health?
Dr: O’Neill: Schedule time with your family to engage in activities you can all participate in. For those with PN, one’s symptoms can quickly become their identity. Expanding activities, implementing relaxation, and/or practicing kindness with self/others are ways of incorporating more novelty and joy into life.
Dr. Deng: There’s no one right way I would suggest for interacting with family, friends, or anyone for that matter. What is important is that your interactions lift both of you up, help you feel connected, understood and fulfilled, and make both people, as much as possible, the best versions of themselves.
I would suggest that as much as possible that you find creative ways to remain safely connected with family – whether that’s staying connected online, outdoors, or in safe indoor scenarios. It’s also important that you feel that you can be open and honest with your family or loved ones about what you’re physically or mentally experiencing, and that they can do the same with you.
8) What would you like patients to know about mental health when dealing with chronic illness and pandemic?
Dr. O’Neill: Although psychotherapy cannot assist in reducing the objective physical pain that is felt, it can help to reduce the added suffering that amplifies subjective sensations. Engagement in activities that were once important to you will expand your world around pain. That is, your pain will no longer be your whole life, but a feature of your experience. It is important to acknowledge the collective trauma the entire world is experiencing. If life becomes overwhelming, take a self-compassion break to reset (e.g., buy/order fav food or flowers; make self-something you’d like; cook a favorite meal; ideal night in).
Dr. Deng: I think in some ways the pandemic is making more accessible and more understandable to everyone the experience of those who deal with chronic illness – the daily struggle and isolation that can come from chronic illness. A silver lining in this is that I think it can also make clear that no one is alone in this – that when you’re dealing with chronic illness it can be easy to feel hopeless and helpless, and that it’s both important and courageous to reach out for help
9) What else would you like to add?
Dr. Deng: Stay connected! Share your experiences – we’re in this together, and we’ll be more successful working together and looking out for one another. And if you feel you need help, reach out. There are many resources available.
For more resources, please reach out to your healthcare provider. Alternatively, you can call 211 for essential community services in your area. 211 (the phone number and the website) can provide you with local community and health resources, including mental health resources, throughout the US and parts of Canada.
The Foundation for Peripheral Neuropathy thanks Dr. Deng and Dr. O Neill for their insights on this important subject.
Dr. Shannon O’Neill, PhD is a licensed psychologist and assistant professor of the Psychiatry Department at Mount Sinai Hospital. Dr. O’Neill works within the neurology/neurosurgery department at Icahn School of Medicine, providing pre-/post-surgical psychological assessments and ongoing psychotherapy to patients implanted with deep brain stimulation (DBS). Primary diagnoses treated within this role include neurological movement disorders (Parkinson’s disease, dystonia, essential tremor), obsessive-compulsive disorder (OCD), Tourette syndrome (TS), and major depressive disorder (MDD).
Dr. Pojen Deng is Assistant Professor with the Department of Neurology at Mount Sinai Health System. He serves as a neurohospitalist with additional outpatient practice in neuropsychiatry, where he treats conditions at the interface of neurology and psychiatry with particular interests in neuroimmunology and epilepsy. He also collaborates across the department in clinical research and education