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Living with Long COVID

Long COVID: Adjusting to a New Norm

As stores reopen and on-site employment resumes, many people feel like the COVID pandemic is ending. However, for those with Long COVID, it’s far from over. In fact, in many ways, their battle is just beginning. Those who have developed Long COVID are still adjusting to major changes in their health and well-being and the impact it has on their life.

While we don’t yet understand enough about Long COVID, we do know that viral illnesses like COVID-19 can lead to chronic, long-term diseases like ME/CFS, POTS, and MCAS. By learning more about the changes you may experience, you will be better equipped to deal with the consequences – both physical and emotional – of Long COVID.

Life Changes Due to COVID and Long COVID

When the COVID pandemic began, the concern was avoiding serious illness and potentially fatal cases of COVID. We entered lockdown and watched as the death tolls began to climb. Masks were required everywhere, and most of us did our best to avoid infection. Unfortunately, the virus spread like wildfire, and millions were infected.

The majority were lucky and breathed a sigh of relief when they recovered. Unfortunately, many soon realized that their recovery celebration was short-lived as symptoms of Long COVID appeared, leaving many people sicker than they were with their initial COVID infection.

When Long COVID Develops

As of April 2022, the American Academy of Physical Medicine and Rehabilitation’s PASC Dashboard shows that, in the United States, Post-Acute Sequelae of SARS-CoV-2 (Long COVID), affects as many as 23,723,035 Americans.

For these 23+ million people, the initial COVID infection was just the beginning of a long battle with COVID. Many experienced minimal to no symptoms with their original infection, only to be hit with life-altering symptoms when their Long COVID journey began. For others, the Long COVID symptoms led to additional medical conditions, such as POTS, ME/CFS, and newly diagnosed diabetes. Many went from active, full lives to being unable to work; tasks that used to be simple became insurmountable. Things like a morning shower could leave them without energy for the rest of the day. A simple walk to the mailbox could make them out of breath.

What We Know About Long COVID

Despite the fact that post-viral illness is common, little is still known about what causes some to recover completely from COVID-19 while others go on to develop Long COVID. Research has shown many different potential causes, but there is not, at this time, a cure for Long COVID. We do not know how long it may last or if a complete recovery is possible. As with many post-viral illnesses, there is the possibility that the virus caused life-long damage.

As researchers continue to learn more about Long COVID, physicians are working to treat symptoms and improve their patient’s quality of life until a potential cure is found. But, until then, how can patients adjust, cope, and live within their new normal? Dealing with Long COVID and its potential for lifelong illness is not a single moment of realization but an ongoing process of coping and adjustment.

Adjusting to Life with Long COVID

There are many coping mechanisms people with Long COVID can learn from those who have lived with chronic illness for years.

Grieving Your Life Before Long COVID

If you’ve experienced Long COVID for years and have developed new medical conditions such as diabetes, POTS, or ME/CFS, it is common to go through a grieving period where you mourn the life you used to have. 

Unfortunately, Long COVID affects many people who, before COVID, were very healthy, athletic, and active. With Long COVID, walking from room to room in your home can become difficult, let alone running or exercising like you used to. How you see your future may drastically change, and it is normal to miss the future you anticipated. In fact, it is common for those with Long COVID, or any other chronic condition, to go through the stages of grieving:

  • Denial –
    “I don’t have Long COVID, I’m sure this will clear up if I am careful with my health.”
  • Anger/Frustration –
    “Why me? What did I do?”
  • Bargaining –
    “If I get better, I will take better care of myself from now on.”
  • Despair/Hopelessness/Depression –
    “This is never going to improve. I can’t live like this.”
  • Acceptance –
    “I have Long COVID, and I am still worthy, valuable, and my life has meaning.”

Achieving acceptance can be a process. While you may eventually accept your new normal, falling back on these other stages is common. This is especially true during times when you may experience disease flares or setbacks in other areas of your life. Grieving is not linear and it’s normal to take a step back when you feel frustrated or overwhelmed.

Accepting Long COVID Doesn’t Mean Defeat!

Accepting a Long COVID diagnosis does not mean you are admitting defeat. It means learning how to treat your body in those ways that support you best – which is vital to your physical and emotional well-being.

Learning to adapt to life with a chronic medical condition such as Long COVID requires listening to your body and learning what can cause your symptoms to get worse and what’s helpful. Once you can recognize triggers and beneficial management techniques and interventions, you can begin to make those changes that result in your best possible health.

To help you through this process, we offer additional posts in this series that address What Makes Symptoms Worse, Adapting Your Lifestyle To Help Minimize Symptoms, and Partnering with Your Clinical Team.

RTHM Helps You Navigate Your Long COVID Journey

A Long COVID diagnosis may mean an uphill battle lies ahead. However, by learning more about Long COVID – what triggers your symptoms and what is beneficial – you are taking the steps to take control of your health and your life. Here at RTHM, our team of specialists understands your Long COVID and post-viral illness journey. Our founders, Dr. Jennifer Curtin and Dr. Ryan Kellogg have experienced post-viral illness themselves, and intimately understand the difficulties involved. At RTHM, we are not only working to help improve your Long COVID symptoms, but we have lived with and understand just how life-changing a post-viral illness diagnosis can be.

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