Editor’s Note: Suzan’s tips may be especially helpful after living this past year with the pandemic.
By Suzan L. Jackson
We’ve had a tough year with a lot of unexpected crises, creating emotional stress, financial problems, and the need for fast action. Most recently, when one son was assaulted in Europe and had to return early from a study abroad program, a family member commented on how well we coped with these kinds of emergencies, how we stayed calm and did what had to be done. It made me realize that 16 years of living with chronic illness has taught us how to go with the flow when things go wrong.
I have learned to expect the unexpected while living with ME/CFS myself, plus for many years having two sons with the same disease and one of them also battling tick infections. The only thing you can count on with these illnesses is their unpredictability. I’ve lost count of the number of times I’ve had to cancel time with friends at the last minute or couldn’t go to my book club or our whole family had to cancel a trip. It’s never fun, but you do get used to the rollercoaster life.
Our sons have grown up this way, learning to roll with the punches and change plans at a moment’s notice. They’ve learned to bear the disappointment of missing out on something but also to make the best of a bad situation. When my oldest son relapsed from the flu and we had to cancel our usual Thanksgiving trip to see family, we focused instead on the rare treat of being in our own home for a holiday.
When we recently got that unexpected phone call from our son in Italy, of course my husband and I were very upset. With so much experience of crises under our belts, however, we quickly moved on to what needed to be done. I contacted our son’s concussion specialist (he’d had one before), a caring doctor who replied immediately with advice for our son and assessed him long-distance with online concussion testing software. We spoke with our son every day to assess his progress (or lack thereof), and when it became clear that he couldn’t participate in any activities, we made arrangements to bring him home early.
Back home the next day, our son kept thanking us for acting quickly and bringing him home. We got him into the concussion specialist immediately and followed the instructions for “brain rest.” Even at that point, our son was remarkably positive about his experience. Yes, a horrible thing had happened to him, and he missed two-thirds of the program he’d been looking forward to…but he told us that his first week there had been amazing, that he’d seen and done so many wonderful things and learned a lot.
Now, a month later, he is almost fully recovered. He can think clearly, has returned to normal activities, and his headaches are almost gone. His professor is working with him on an individual project to get credit for the course. And we are hoping that the travel insurance (we never travel without it!) will come through with reimbursement for us soon.
Subscribe to the World's Most Popular Lyme Disease Newsletter (it's free!)
In the midst of all of this, I realized that living with chronic illness has made us emotionally stronger and taught us to adapt when things go wrong. All of those unpredictable days, weeks, and months taught us how to cope with uncertainty and crisis. Here are some tips for when the unexpected happens to you:
Take time to grieve. It’s important to acknowledge and feel the raw emotions that come up when something horrible happens. You can’t move forward until you allow yourself to grieve. It’s OK to cry and let go and feel awful for a while. In fact, it’s healthy and necessary.
Start moving forward. Once you experience that anger and hurt and sadness, it’s time to start thinking about what you can do to help. Even in our case, thousands of miles from our son, we could contact the doctor, talk to our son frequently (he was very upset at first), and begin thinking about what came next. Taking steps to ameliorate the situation will also help you to move forward emotionally, as long as you have first dealt with the grief.
Face one day at a time. Try to think about what you can do right now, today, to help with the crisis. It’s best not to worry too much about what comes next week or next year because that can lead to ever-worsening anxiety. Instead, focus on today – or even just this minute. Taking things one step at a time will help you to stay calm and able to help.
Seek support. A few days into our crisis, I realized I really needed someone to talk to (besides my very supportive husband). I turned to my online support group of parents whose kids are sick. True, this incident had nothing to do with ME/CFS or the other chronic conditions covered in our group, and it was the recovered son who was injured, but I knew they would “get it.” And they did. I vented out all of my concerns and anxiety to our private group, and – as always – they responded with compassion and understanding. It was just what I needed. Try to find just the right source of support for your situation, whether a friend, support group, or therapist.
Unexpected crises are not just a part of life with chronic illness; horrible things happen in every life at one time or another. When these things occur, though, our lives of chronic illness have an unexpected silver lining. We’ve been training for this ever since we got sick! You can use the skills and coping mechanisms you’ve learned from your chronic illness world to help you through whatever else comes up. As an added bonus, we can also help our loved ones to find their way through whatever life throws at them. Hang on – it’s going to be a bumpy ride!
This article was first published on ProHealth.com on August 26, 2018 and was updated on June 14, 2021.
Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS for more than 20 years and also has Lyme disease. Both of her sons also got ME/CFS , but one is now fully recovered after 10 years of illness and the other was in college, still with ME/CFS plus three tick-borne infections, when this article first posted. She writes two blogs: Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com. You can follow her on Twitter at @livewithmecfs.