Opinion | COVID isn’t over for Michigan long-haulers like me

Hope has replaced despair with the first year of the coronavirus pandemic behind us. Effective vaccines, better treatments and a massive stimulus bill are giving encouragement that we may see an end of the worst of this nightmare this year.

But Covid isn’t over for me and tens of thousands of Michigan residents who continue to suffer sometimes debilitating health issues from our bouts with the coronavirus.

Five percent to 26 percent of those infected with coronavirus are estimated to be suffering long-haul or long COVID symptoms, lasting months after their supposed recovery.

In Michigan, 35,000 to 160,000 of the 670,000 people who contracted COVID-19 may be suffering from continuing symptoms for weeks or months after the active infection has cleared. Of growing concern is that even those with mild symptoms of COVID initially are experiencing long COVID issues long after the initial sickness.

While increasing scientific evidence about the persistence of long COVID issues is being compiled, unfortunately the state of Michigan continues to mark all of those who have survived for 30 days after their diagnosis as “recovered” from the disease.

This shorthand for people who are no longer acutely ill has potential implications for those experiencing the life altering impacts from this continuing illness.

As Michigan reports a spike in infections during March, particularly among younger populations, we are clearly failing to assure that people understand that dying is not the only threat from COVID-19. Tens of thousands of people are being left with debilitating illnesses of unknown duration from widespread post-COVID syndromes that is not being adequately confronted or prevented.

Each long COVID survivor has a unique set of symptoms, with varying degrees of debilitation, which is a perplexing and challenging situation for both the survivor and medical professionals attempting to treat them. For many long COVID sufferers, medical tests are showing little or no evidence of sickness that explains their very real symptoms. Sympathetic medical professionals are challenged to explain what is happening to their patients, and in Michigan there are few practices which are combining efforts to assess the long COVID experience.

My experience as a long COVID survivor is just one of the millions around the world. During my six week bout with acute COVID starting March 1 last year before the pandemic was declared, I couldn’t get a timely virus test. Two and one-half months later a test for antibodies confirmed my illness. Among health issues I’ve confronted during my long COVID experience are blood clots in my leg, extreme fatigue, hacking coughs, shortness of breath, brain fog, dizziness, gastrointestinal issues, hair falling out, heart palpitations and a relapse in October that seemed to reactivate and worsen symptoms. Some of these symptoms continue a year after I first became sick. Aside from the blood clots and heart palpitations, no other medical tests documented or suggested treatments for the majority of these symptoms.

How do you treat a massive and growing health problem that doesn’t even have a formal name? Even more confounding, how do we address an illness with symptoms that can include “brain fog” and other neurological issues, postural orthostatic tachycardia syndrome (POTS), blood clots, fatigue, arrhythmia and palpitations, joint pain, persistent fever, hair loss, gastrointestinal issues, excessive coughing and shortness of breath, just to name a few.

There is an irony in wanting to have a diagnosis come back that proves you are ill, and frustration with having nothing to point to. For many long COVID sufferers this is terrible situation. They are forced to continually delay or cancel activities, from work to school to family duties, with little to point to explain their illness.

Governor Gretchen Whitmer, Medical Executive Dr. Joneigh Khaldun and the extraordinary medical professionals of Michigan have brought hope to our state that the end of the pandemic is in sight. They deserve our profound thanks for their extraordinary work.

It is also time for the state of Michigan to recognize that tens of thousands of us, however, are not “recovered” from COVID-19 many months after we became sick. We need support from the state in validating that our challenges are real, and that we are living day to day with debilitating illnesses with no clear indication when, or if, we will recover.

Acknowledging in state reporting that long COVID is real is an important first step.