Much of the news one hears about Covid-19 focuses on death rates or the number of newly infected. Forgotten are those Covid-19 patients who survived, after a treacherous illness course. I recently started a support group for Covid-19 patients who are feeling traumatized by their recent and ongoing experiences with pain, fatigue and the discovery of new other major health problems that may be linked to the virus.
The group members were home, quarantined, or in a hospital isolated from their loved ones, and now are traumatized. During the active illness period, all of them thought they would not wake up the next day. Some of them are terrified of going out worried that they could still infect someone or that they could be re-infected. The predominant moods are anxiety and fear, but all also feel some depression. Their current distress response is normal and expected. Most people faced with their experiences would experience strong emotional reactions in the short term and would not be seen as having a mental illness.
The patients in this group are obviously self-selected for those who had a difficult illness course. But interestingly and surprisingly, since the group started, one patient who was having double vision had an MRI and discovered she had a recent stroke (not in an area consistent with vision problems) and another was told that she had had a silent heart attack. And just this week, a new member described having been re-hospitalized with a life threating blood clot. An article in the Financial Times titled “The mysteries of prolonged Covid symptoms” documents many unexpected and not well-understood symptoms that have arisen in the sick and the “recovered patients.”
Major stressors for all in this pandemic are the unpredictability around the virus. The patients in this group are all grappling with this. Often, their family and friends have trouble with providing empathy and support. After all, they survived. That’s true, but they also might be left with lifelong medical problems and stressors. Another common theme is fear and rage at people in their community who do not wear masks. What could be a joyful excursion turns terrifying.
Essentially these patients are coping with multiple losses – Loss of good health; Loss of predictability; Loss of financial stability; Loss of identity; Loss of feeling immortal. In addition, they are coping with multiple traumas, the stigma of being infected, physical effects of the virus, as well as the sudden and explosive change to the world around them.
While many refer to any loss reaction as grief, this is a misnomer. Grief is a loss reaction that arises specifically as a response to death. So the loss associated with Covid-19 survival is not grief per se. But it has several some commonalities. Research has shown social support, accepting the reality, and regaining a belief in a positive future are linked to resolving acute grief.
If you know someone struggling with Covid-19 losses, there are several ways to be helpful. First, actively listen to what they say. All too often we “hear” what we believe or think, not what was communicated. Being heard helps people feel better. Sometimes just taking a minute, on the phone or wearing a mask and sitting at least 6 feet way, silently listening is all that is needed.
Validate their experiences; they might be different from how you would have responded. It’s the Covid-19 survivor’s current and very real experience of the losses. You do not need to solve the problems. Each person’s loss reaction is unique while also having some commonalities. Allow room for both of you to begin to accept the vulnerabilities around all of Covid-19’s outcomes. Listen with suspended judgment. Accept the sadness, fear and anxiety. Don’t offer reassurance or advice. The goal is for both of you to feel understood. Ask open-ended questions like, “What has made you feel better in past?” There may be times when you are too overwhelmed to support another person. Teach self-compassion by letting the survivor know that right now I’m too anxious to listen, but tonight when I feel better I’ll call you.
Some of the group members say people ask them detailed questions about how they got the virus. It felt as if the questioners were try to assure themselves that they could never get it and the survivor must have done something wrong. They felt stigmatized by the questions. If the Covid-19 survivor wants to tell their story listen and accept it. If they are not ready to tell the story, don’t push them.
One reason every one is baking during this pandemic is that it promotes our sense of competence and provides a positive experience in a world that is tearing all we know apart. This too is an effective way you can help: find areas that can foster the survivor’s sense of competence and that provide a positive experience. You might not be able to get together, but you could play games on-line. Or you can drop off the supplies for a fun crafts project. Then use Facetime or Zoom to share the experience.
If you know someone who had a difficult time with their Covid-19 illness course, reach out even if they have not kept in contact with you. Give them an opening to tell you how they are coping and try to support them using some of the suggested strategies. Reach out to them regularly by text or phone for a short call. It might take several contacts before they feel comfortable opening up.