On Tuesday, May 29, I had the honor of presenting at a webinar hosted by the Society for Participatory Medicine. As my very first online webinar, I admit that I was nervous. I have presented before, but in a far different capacity and with less technology involved. I wanted to provide my notes on the presentation for any of those who are interested. I had slides, so you will find everything numbered. This should also help with easier navigation and increase accessibility.
Beside myself, there were three other presenters, including Julianne Holt-Lunstad, Ph.D., Jeremy Nobel, MD, MPH, and Gabe Howard, who were absolutely outstanding. I say this from my unique position as a health professional and a patient. I highly recommend listening to the entire webinar, which is available here, especially if you know or treat an individual with chronic illness. So many dismiss social isolation and loneliness as minor inconveniences or solely the domain of mental health. However, it deserves more recognition and must be addressed in any thorough treatment plan for patients with long-term and/or mobility related illness.
I would like to preface the notes on my presentation with some commentary, which is difficult, but necessary. This is not a fun topic for me. It is hard and terribly painful. I still do not know how I made it through my portion of the webinar as the emotions were so raw. The thing is, that I don’t like dredging up all these painful things, but this is really important.
This webinar gave others a tremendous opportunity to learn about a little-known topic, but it also gave me a huge platform to convey a lot of things I was struggling with internally. I have always been the type of person who wanted to alleviate the suffering of others, to not be someone who caused pain or suffering. If I could take the pain of others, especially those I care about, I would, and I would do so, willingly and without exception. So, it came naturally to me, that when I became really ill that I protected people I cared about from the worst parts of my illness. I not only downplayed my physical symptoms for years, but I turned away from many of the people who could have been a great support to me. Of course, they knew of the physical bits, but I never told anyone what was going on in my head. In my head wasn’t a good place to be. The thing about chronic illness, especially the type that comes on suddenly and is severe, is that it is completely devastating on an emotional level. It isn’t that I don’t have good moments, because I do. I can even be happy in those moments, but the truth is that cobbling together brief moments are not enough. Being socially isolated just out of sheer circumstance is one thing, but compounding it all with loneliness and reacting to it by turning more into myself…That, however, is all on me and I think I might lose a whole lot because of my choices.
What I am trying to say here is that, it is important for those interacting with anyone with chronic illness or mobility issues to be aware that there is so much more to care about than physical symptoms. Please, spare more than a moment to ask us about our support system at every point of contact, especially after the first couple of months. The longer we go without meaningful contact with others, the more despair grows and the more we are likely to engage in unhealthy coping behaviors or self-harm. If you are reading this and are living with a chronic illness, please know that you are not alone. So many people feel the same way you do right now, even if it doesn’t feel that way. If your health care provider(s) don’t bring it up, please let them know how you are feeling. Make it a priority.
If you have any questions or comments regarding my portion of the webinar, please feel free to leave your query below in the comment section or send an email to email@example.com
- Today, I would like to start by telling you a story. A story about a woman who was in the prime of her life, when the sudden onset of a mysterious illness threatened to take everything from her. As you may have guessed already, that woman is me.
- On March 29 of 2016, I started with a headache in the morning. By dinner time, I felt something that can only be described as a never-ending explosion in my skull. I lost the ability to speak and all function on my right side. Despite a rapid arrival to the emergency department, I was discharged without a clear idea of what happened. I would spend the next several months with near daily migraine and greatly diminished strength on my right side. I couldn’t be left alone. Besides family caregivers, I had a flurry of friends and home health workers coming in daily. I was never lonely. But all that changed after 3 months.
- “I thought that, as a health professional, my awareness of the dangers of social isolation would protect me from its negative effects on my mental and overall health. It didn’t.” From my background in research and public health, I had read much of the available research revealing poorer overall health outcomes. Most of the research discusses loneliness in the elderly, but I was not even out of my 30s. Surely, I would make a swift recovery from whatever was stealing my life from me.
- A year went by and then two. I was not better. Diagnoses of hemiplegic and chronic migraine, occipital neuralgia, fibromyalgia, and other conditions piled up. In just two years, I was unrecognizable even to myself. The thing about loneliness is that it creeps up on you and you are okay until you aren’t.
- There are numerous barriers to social interaction when chronically ill. Isolation is not just physical, but emotional as well.
- One of the largest barriers was the loss of my mobility. Just getting to places became near impossible because I couldn’t manage stairs or even driving. My parents live across the street and it was agonizing just to get into their house. Dietary restrictions from numerous diagnosed food allergies effectively made it so I couldn’t eat anything anywhere outside of the home. Since so much socialization occurs around food, this was another barrier. In the darkness of my mind, I became overcome with grief and a deep embarrassment that I couldn’t manage my own home. Who would want to visit and see me like this.
- Emotional barriers take, perhaps the greatest toll. I lost my life as I knew it before and was thrust into this new world I didn’t understand and that wasn’t created for me. The process of grieving seemed endless and lonely. It felt like no one understood or cared to understand that I felt robbed of the life I was promised. I could no longer discuss my job, as I had none, or outings with the family, because I was confined to my house. Even discussions with family were difficult and I started to avoid them. I was ashamed that I wasn’t recovering, and I was tired of answering questions about “when I would get better”. I didn’t feel that there would ever be a “better”
- The Isolation affected me in many ways. Mentally, I became anxious and deeply depressed. I felt as if I lacked any purpose. Physically, I noticed that I became weaker. There was no one to get up for and I certainly wasn’t going back to the gym. I forgot medications and exercises prescribed and ruminated in the quiet of my life. Multiple cancellations at the last moment due to my health led to no invitations. Friendships grew distant and strained, some crumbling to nothing. I watched my family have fun…without me.
- I eventually hit a point where I knew that I could not go on like this. I fired nearly all my health care providers and started from scratch. I talked about my loneliness on the very first visit to my new primary care. We decided on a course of medication and therapy. I started to think creatively as to how I could work around my health to make connections with others. This led me online. I found that I was pulled towards people in similar circumstances. I developed some amazing friendships, which I discuss in my most recent blog post. My small group of support became my soul sisters, my core. It was then, I finally started to really process my grief and feel less alone. I flung myself head-first into advocacy work and I felt like I had a purpose again.
- As a patient, I have certainly had a lot of time to think on solutions to social isolation. For providers, there is so much potential to have an enormous effect on patients by including isolation and loneliness in mental health screeners. Make sure that you have educational materials and resources for social services. Most importantly, ask your patients how they are and really listen to us.
- Caregivers and care partners can also play a role. Even with mobility challenges, there are outlets for finding a new sense of purpose. Make sure that you are getting out too, because you can become isolated as well, serving neither your interests or those of your loved one. Remind us that people do care about us and invite others for short visits around our schedule. And don’t forget to listen to us. You may be the first to notice when we are struggling.
- My experiences have only brushed the surface, but I would like to end with a quote from Helen Keller. “Walking with a friend in the dark is better than walking alone in the light.” Though unconventional, online friendships have made a world of difference to me.