How have you been feeling lately? Are you not doing as well as usual in the face of worldwide lockdowns from the COVID-19 pandemic? Is your life filled with new concerns and uncertainty with underlying anxiety? Doing a little too much symptom checking? Are you overwhelmed by the sense of isolation? Do you have a newfound fear of contagion? Has getting out of the house for grocery shopping become much more difficult than usual? Are you beset by a lack of energy, fatigue, and consequential boredom? You are going through aspects of daily living that are “normal” for many people with chronic illness. In this blog post I will compare similarities between COVID-19 lockdown and what has always been true in the lives of many chronically ill individuals.
Anxiety and Isolation
When comparing lockdown to chronic illness, even the most well adjusted person has probably suffered at least some anxiety since news first broke of the COVID-19 Corona Virus first spreading overseas. Maybe it started with predictions of a coming pandemic. That anxiety probably increased greatly as this prediction became true. Then lockdown was ordered from one county to another, one state to the next.
For many chronically ill people this feeling of unease, sensitivity, hyper awareness, and worry is a daily fact of life. Lifestyles become attuned to and adjusted around illness. Fears for ones own well being and safety can be a great source of anxiety. For some this anxiety becomes a personal lockdown order from their own psyche. Mingling with the outside world becomes intolerable due to the extreme effort needed and sense of risk this causes. This can be true, even when the individual might still long to be social. It’s just too hard.
When you are chronically ill, isolation is often a fact of life. For many, it’s a daily fact, even with no official lockdown order in place. In comparison to lockdown, isolation from chronic illness is a long term sentence, because there is often no end in sight. The isolation from being homebound is often compounded by a lack of visitors to homes of the chronically ill. While often not being in the work force, attending school regularly, or able to join in repeating social groups or community activities, we are often forgotten and overlooked. It often seems like a case of out of sight, out of mind.
Fear of Contagion
Since my diagnosis as a chronically ill person with Myasthenia Gravis, I have had to be aware of keeping away from people who have colds or are sick. This is another aspect to consider in comparing lockdown and chronic illness. Chronic illness worsens when exposed to new contagions. This is why the chronically ill are considered high risk individuals in the COVID-19 pandemic. Comparing COVID-19 lockdown to chronic illness, the general population has experienced a heightened fear of contagion that the chronically ill deal with daily.
COVID-19 is especially tricky, because many carriers are asymptomatic. I’ve heard people confidently state that they don’t need to wear a mask, because they have no symptoms. This might have been advised at the onset of the virus spread, but current knowledge has changed. Each and every person who does not wear a mask in public risks infecting another person. This is what caused the need for lockdown in the first place.
When all you hear every day is news about illness and its symptoms, it’s easy to start feeling ill yourself. As defined by the Oxford English Dictionary, hypochondria is an “abnormal anxiety about one’s health, especially with an unwarranted fear that one has a serious disease.” This is something I will call “hypochondria” in quotes, because in times like these worrying that you are sick is not so unusual. It’s not exactly the same thing, but a worry and sensation that heads in the same direction.
I liken this to when I was first diagnosed with Myasthenia Gravis, and I did not yet know my ebb and flow of symptoms, much less what the disease actually was. To tie in with the first paragraph’s anxiety and oversensitivity, every little physical change or hiccup was terrifying. I was having to educate myself about my disease, and I was sorting through a lot of information from both good and bad sources. A lot of things made me worry about getting worse that were actually nothing at all.
I’ll compare that chronic illness newbie experience to what many are currently experiencing with the pandemic hitting the US right as Spring is arriving. I am certain that every allergy suffer has had to take a step back at least once to keep themselves from thinking pollen irritation is the beginning of a bout of COVID-19. Such anxiety is completely natural and understandable.
A good deal of chronically ill individuals are on disability and fall prey to the whims of government policy for having income and coverage for necessary medical treatment. I compare this to the current pandemic population relying on the government to provide financial relief and also to have a system in place that insures sick people get the treatment they need. A great deal of the world is living in economic uncertainty during the pandemic.
When you are chronically ill, the only certainty is that there is no cure. That is a one to one comparison between chronic illness and COVID-19 at this writing. Chronically ill individuals will usually have fluctuating symptoms with some good days and some bad. In some diseases, remission (as is possible with my diagnosis – Myasthenia Gravis) can occur. Even in remission, you still have an underlying illness.
Living with the uncertainty of the type of day you’ll have symptomatically from one day to the next takes a lot of getting used to and accepting. That said, looking forward to the good days and not constantly dwelling on the downside is imperative. A proactive outlook during pandemic lockdown is also key. It’s kind of a glass half empty or half full conundrum. The COVID-19 pandemic has definitely changed our perspective, if only for the time being. It’s still best if we at least try to make the best of things.
I bet you are communicating via Zoom or Skype more than usual in lockdown. Virtual communication is always a must with chronically ill individuals as it is now to you in COVID-19 lockdown. From social contact, to support, to virtual doctor’s visits, the almost complete dependence on virtual communication that you are now feeling during lockdown is a way of life for many chronically ill individuals. Otherwise many are faced with a life in social isolation.
There is a drawback to virtual communication, of course. When using social media, one must be increasingly wary of its affect on one’s mental health – especially in lockdown and true isolation. We all know about how difficult it is to navigate the field of “friends” on social media.
In addition to that obvious roller coster, fact checking is more important than ever, especially when relying on media sources for health advice. Even specific health forums and groups can be an unhealthy outlet. I can never say it enough, getting your mind away and off of illness is usually more curative than obsessing about possibly dicey information or being party to social drama in the guise of medical advice. A culture of illness is not always a good thing, even when approached in a fact finding sense.
Feelings of Uselessness
People under lockdown are feeling what it’s like to be ripped from a productive routine, which can be compared directly to the lives of the chronically ill. Most of us would probably like to help make things better somehow in the face of the pandemic, but how? That is how I feel at least one day a week in my normal life, and I am generally thought to have a good handle on the situation. Even though I create and promote art almost daily, and blog when I can (usually during IVIG treatment), the feeling can be almost overwhelming. Why am I even here now? What good am I to anyone? Will I be forgotten? Complete anxiety from isolation. The feeling of uselessness lurks constantly.
Ironically, many chronically ill people are actually sailing along fairly unfazed during the pandemic. What the rest of the world is experiencing as new is the same old, same old for us.
Fatigue and Boredom
I’ve been hearing from almost everyone I know that they have been fatigued, or sleeping far more than usual in lockdown. This is often a response to stress and uncertainty. Chronic illness causes stress and uncertainty just like being in lockdown. Aside from that, some illnesses themselves and the medications that treat them can cause fatigue and sleepiness. One important way (for everyone) to battle this is to keep a schedule. The worst thing you can do is get your circadian rhythm mixed up – or have your days and nights reversed.
In closing, most people do not want to be as much of a homebody as the chronically ill person is forced to be. Combine the factors above, and it can boil into a helpless feeling, very bored person in lockdown. Most of us feed off of at least some contact with others for interaction and activity rather than choosing isolation.
A theme throughout my blog that I am now seeing over and over again on social media and in the news is that this is a fantastic time to start a hobby. A lot of folks fight boredom with television, but even it is facing a deficit with no sports on and no new material being filmed for shows and movies. Try something new. It IS possible. Look ahead. COVID-19 lockdown will most likely not last forever. Be good and stay home in the meantime.