Rocks balance by waterfall

Disease Management:

Finding Balance
in Uncertain Times

Margaux Thieme-Burdette April 10, 2020

As coronavirus continues to grip our communities, it’s hard to say what the enduring emotional toll could look like. COVID-19 has already opened the door for a number of unwelcome guests – anxiety, fear, uncertainty – and it’s hard to know how to cope.

These emotions may be weaving around a spectrum of potential scenarios, such as hospital visits, death from the virus, symptom flare-ups from stress or illness, and limited access to critical medications and medical care.

Some may already be experiencing fallout from the situation, in the form of isolation, mental health crises, loss of financial stability, abusive homes, and other challenges.

It is a difficult time for many reasons.

UNCERTAINTY AS THE NEW NORMAL

The uncertainty can easily pull you into a head-spinning dance between feeling like the virus itself is a grave situation and wondering if we’re approaching it the right way.

Are we too strict? Not strict enough? Should we have acted sooner? How long will this go on? What effects will social distancing have long-term?

Or maybe your feet are planted firmly in the fear of catching the virus or having complications. If you’re still working in public, you’re constantly coming into contact with other people. But even if you’re at home, a mere trip to the grocery store may  mean your risk increases and, reasonably so, anxieties about the virus can bubble to the surface.

While attempting to physically keep six feet of distance between yourself and others, the tendency may also be to distance socially by looking down, not smiling, tensing up, and leaning away. This natural shift in body language and decrease in human interaction only tightens the firm grip of fear.

 

Anxious woman in crowd covering face

 

In hospitals, the strain for resources and equipment to properly care for the sick is affecting quality of care for those with and without COVID-19. The thought of needing urgent or routine hospital care to address your chronic disease may make you feel anxious, helpless, or scared.

While the coronavirus seems to be more serious in high-risk individuals, small numbers of healthy people have also contracted severe cases. There is much about this virus that we do not know yet. Researchers are still searching for explanations through genetics, pollution, immune system response, and exposure to varied viral loads. 

It can make you feel like a ticking time bomb, even if the chances of an unfavorable outcome are small. What makes it even more unnerving is the constant barrage of statistics, building up the suspense like a thriller film.

When is it coming for me? 

The situation is real and precautions are necessary; however, to be alerted every time a new COVID-19 headline appears can do more harm than good. The intense amount of coverage can be suffocating and unhealthy.

Effects of Imbalanced Responses

The looming possibilities of severe illness and death fuel our daily anxiety levels. This prolonged activation of the stress-response system (known as “fight or flight” mode) can have harmful effects on the body, including the immune system. It can also result in mental health concerns.

Many people have been drawn towards impulsive reactions or fear-based decisions, which have adverse effects on certain high-risk populations like the autoimmune disease community.

Recently, people with lupus, Sjogren’s, RA, and a few other related diseases have felt the effects of heightened coronavirus anxieties. A drug many of them take every day to keep symptoms under control and prevent their health conditions from worsening, called Hydroxychloroquine, was being considered as a potential treatment for COVID-19. As a result, the drug was being stockpiled and its access restricted. It is not a proven treatment for the virus, yet the rush to find a cure promptly puts lives in peril.

Many individuals, especially those with chronic illnesses, are also being denied routine procedures and treatments because of the focus on coronavirus. Fear-based responses to the virus can be just as concerning as the virus itself.

SHIFTING OUR FOCUS

All concerns and emotions are valid. Every day we wake up to infections spreading and a medical industry that still has more questions than answers. What can help, is focusing on what we do know. 

We know that many people with COVID-19 are admitted to hospitals and then subsequently able to return home. Even if you’re high-risk, falling ill does not mean it will be severe; you can catch COVID-19 and be ok. For every tragic story out there, there are many more that fill us with hope.

We are also continuing to understand and fine-tune precautions that actively reduce the risk of exposure, as well as help manage the current tensions and anxieties. This includes handwashing, wearing face cloths in public, disinfecting surfaces, staying home, having a plan if you fall ill, taking breaks from the news, connecting with your support system, and focusing on adequate sleep, nutrition, and hydration.

Through it all, we are constantly reminded that everyone has different concerns and is living through this time in their own, unique ways.

ADDRESSING UNCERTAINTY

Another way to shift our focus is to work on accepting what we can’t control and recognize what we can. Instead of watching the clock or waiting for clarity, we can more smoothly navigate the pandemic by accepting the uncertainties.

We don’t have control over everything; it’s not ideal, but it’s ok. Life will never be without uncertainties in some form or another. It’s what we do in response to them that determines our perception and ultimately shapes our experience.

This goes for anxiety, fear, frustration, or other emotions you’re feeling. It’s ok to have those feelings and to accept where you’re at, even if it’s not where you want to be. The situation is constantly shifting and changing, as are your emotions. The only certainty we have is that everything is temporary.

Using Chronic Illness as a Tool

In chronic illness land, we live under a rain cloud of potential pain or symptom flare-ups every single day. The pandemic is another layer on top of all of that, and one more thing that’s out of our control. One more thing threatening our lives. We have the choice to respond in one of two ways.

We can see COVID-19 as yet another issue that’s piled upon the mile-high stack we’re already trying to contend with in our everyday lives. We can recognize the poor state our bodies may be in and conclude that if the virus attacks it, it won’t be good.

Or we can look at COVID-19 square in the face and say, “I’ve overcome challenges and stresses greater than you, so I can handle you, too.” It doesn’t matter if we think that’s true or not – only that we say it, write it, repeat it.

Remember that so far, your track record for getting through bad days is 100%. Focus on the kind of person you are, rather than the state your body is in. Celebrate how skilled you’ve become at dealing with what your body throws at you, what life throws at you.

Isolation? Been there done that. The unknown? That’s my everyday.

Use your past and present health challenges as tools to help you get through this one. Because whether you like it or not, while you’re waiting for the pandemic to end, your life is happening.

You may not be able to control the outcome, but you have the power in your own mind to change the way you see it – to change the way you live through it.

6 WAYS TO FIND BALANCE

The fear, anxiety, frustration, overwhelm, confusion – all of it is real and valid. Give yourself space to feel, while recognizing that there are actions you can take to relieve the burden of these emotions.

1. Be kind to yourself.

What would you say to a friend who’s feeling scared, anxious, frustrated, or overwhelmed? Remind yourself to have compassion as you would for a friend, and use that same language internally.

1.5 Be kind to others.

The only thing you can control is yourself. Strangers, partners, friends, parents, and siblings are experiencing and responding to the pandemic in different ways. You may see them doing or not doing things you don’t agree with, and become upset. Those accompanying emotions won’t inspire change in others. But they will change you – and increase your level of stress.

Being kind does not mean you agree. It does not mean you are letting go of your beliefs. By noticing your feelings but compassionately letting others be, you are easing anxiety within yourself. Try to keep the focus on what you are doing to feel safe, calm, and content.

2. Talk to your healthcare practitioners.

What is your risk level of catching the virus, or of developing severe symptoms? What kind of precautions should you take for your specific condition?

3. Write out the potential scenarios and what your plan is for each one.

How you respond is what you can control. Having a plan in place can help calm your mind, knowing that the future is a little less unknown.

For example: If you get sick with moderate symptoms and stay home in isolation, record what you’ll do for medical care, food, emergencies, medication, etc. If you become severely ill, write down the first steps you’ll take, who to contact, which hospital go to, and what to bring with.

4. Envision best case scenarios.

Beyond what you can control (which is how you respond), try to let the rest go by shifting your mindset. 

Close your eyes and let your thoughts cycle through each worst case scenario you’re concerned about. What is the root of those fears? Take a look at the emotions coming up for you, and accept their presence.

Now try to think about the opposite – the best case scenarios. What if I get sick and it’s mild? What if I don’t get sick? What if this ends soon? What if I get through this and I’m ok? What if something good comes from this?

The point is not to have a false sense of hope, but to give your mind a more positive outlook to attach to. Either scenario has a chance of materializing. In your mind, you get to choose which one to give power to.

5. Talk, talk, and talk some more.

Express your feelings to people you trust, who will respond with compassion. Learn what others with chronic illness are doing to stay positive.

Reach out to your chronic illness community via Facebook, Meetup, local support groups, or through specific disease organizations. Join @AutoimmuneGAI on our Instagram account where we share resources and information, and connect with each other.

Follow hashtags on Instagram like #highriskcovid19 #spooniesupport #butyoudontlooksick #chronicillnesslife #autoimmunewarrior #copewithanxiety #selflove 

6. Limit exposure to the news.

The more you watch or read, the deeper you’re pulled into a fearful state of mind. You might start to feel like you need to know how many new cases there are or what’s happening every second – just like you may feel the need to check social media multiple times a day. It can be addictive.

To stay informed, reach out to your support system. Ask a trusted friend or relative to be in charge of alerting you to any new recommendations by public health officials in your area.

Otherwise, set firm boundaries with yourself. For example: you may decide to read updates on what’s happening in your local area for 30-60 minutes each day, but avoid any coronavirus news in the morning or before you go to bed.

Learn more about dealing with fear and anxiety during the pandemic in Coronavirus Anxiety: Key Advice for Chronic Illness Patients from Health Psychologists.

Note: Always contact your healthcare provider or therapist with any mental health concerns.

Share Your Insights

Do you have comments to share? Ideas to add? Is there a story you’d like to tell? GAI would love to hear from you. Send Margaux an email at margaux@autoimmuneinstitute.org.

To share your personal story of autoimmune disease and be featured on our website or Instagram (@AutoimmuneGAI), head over to the Autoimmune Stories page.

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