“ Pain/illness management in the Pandemic, what a concept”
In praise of our skills, we are the teachers
Leadership during the winter season
If we thought we were on stimulus overload, and had “too much on our plate” with our chronic pain and illness before the pandemic, we just time traveled to our absolute limit. We were already taxed and sometimes overwhelmed managing daily health challenges and wellness lifestyles. Then we really were thrown a curve ball with the pandemic. A deadly illness was in our community, threatening our health.
Twelve months later, we are taking stock of where we are now. We have all been practicing the public health basics of masking and social distancing, trying to care for ourselves and our families. We are looking forward to a vaccine. What have we learned about chronic pain and illness?
Well, one of the first things most of us have learned is to practice mindfulness, appreciate the moment, stay in the day, as it were. Why? Well, a bite-size approach to the day allows us to cope with what is at hand and reduces anticipatory anxiety, which just makes a hard experience harder. What if? We don’t have the luxury. We already knew we couldn’t predict how we would feel moment to moment, and those of us with rare diseases or conditions just couldn’t predict what our bodies might become. But now life is even more fragile and tenuous, making the need to stay present more important. Life is about the now. We eat melon, watch sunsets, and enjoy the company of loved ones, knowing the incredible uncertainty of the future.
We have also learned to prioritize our friends and families, quality over quantity, and to deemphasize the importance of others’ expectations. The pandemic demands that we relinquish fantasy and put first things first. We may find ourselves more than ready to accept changes in our lives to which we were previously resistant. We may accept changes that were previously unacceptable. It is as if we were viewing a painting and the foreground shifted. Objects and situations came into view that were previously hidden. Certain aspects of our lives took on new meaning.
Many of us previously managing pain and illness already have possessed these skills. We may have much less trouble with social distancing, Zoom meetings and other virtual activities because we have already learned to manage our environment to cope with our disabilities. The hard part now is when an unaware other negatively judges our adaptation. Many of my pain illness clients find teletherapy more useful than in office, because they are guaranteed to have immediate access to their session.
We have been accommodating and adapting to find balance in our schedules, methods, media and the like. We could tutor others in the art of accommodating. We know to avoid the” back to normal” expectations that endanger our health, and threaten the poignant meaning of our physical struggles. We know what “ a new normal” can look like, but it is further changed by the pandemic. We are not as threatened by the new normal adjustment as those who are used to feeling well, we have had our visions blurred and our hopes reformed. We weren’t previously able to enjoy the abandon or freedom of frolicking through the world unfettered, so we have learned to enjoy Netflix as much as the cinema, most of us. We can mentor our families and kids into one day at a time living in the new normal.
I have found in my practice, that my clients with pain /illness considerations could easily teach all of us how to cope with the pandemic. They can teach us to give up excessive expectations, perfectionism and control, how to stay grounded in the moment, and how to focus on life while surrounded by illness and death. In this arena, we are warriors, survivors, and wise. Let’s stay mindful of this as we live each day as healthily as we can.
So, in keeping with our basic principles of noticing our portion of wellness, living in the moment, planning in pencil, pacing activity and rest, and living in the new normal, authentically, one day at a time, how do we address rituals and holidays in the pandemic?
We start with safety first, and that means tiny, masked gatherings with individual portions and fresh air. It means laying aside expectations that we will have “the old normal”. It means out-of-the-box thinking about the meaning of celebrations, about gratitude and spirituality. We have done this before.We have enjoyed a quiet meal or movie when we weren’t able to go to the marketplace. We are more experienced than our brothers/sisters at creative planning. Let’s be the leaders until we are all safe!
This time, if we are fortunate enough to be physically safe, can encourage us to look at where our focus was, and the utility of focusing more simply and efficiently. For example, the holidays we celebrate, some of them, across ethnicities and religions, have to do with gratitude and celebrations of survival, rebirth, renewal, and the well being of the community. Some of them are related to conquering and colonizing, but I believe the restrictions of the pandemic can cause us to focus only on what is most important, safety, gratitude, and love for family. In fact, if you take a look at it, some of you may find that some of your relationships may have improved in quality since the pandemic. When we are stripped of the usual rituals and routines we have grown accustomed to, we can focus more on gratitude for our relationships and the small things.
And, it’s in gratitude for, owning, writing, and living our own story, so to speak, that we solidify our own uniqueness as a person addressing chronic illness and pain, and hopefully feel less defined, owned or circumscribed by the illness/pain.
In addition, it feels important to mention that we continue to need legislative, financial and recognition based support for how living in a pandemic is so much more difficult for disabled or pain suffering folks than the average person. Please let me know any future blog topics that would be timely and relevant.
Thank you for reading!