I’m now considered a “long-hauler.” One of the “invisible sick.” Over six months since my first symptoms I still take steroids and supplements to keep me going, still nap much of the afternoon, still visit doctors, and still take tests to learn what is wrong with my body.

I’ve travelled the world for years, but still haven’t left my condo since March, except to go to doctors. I have been taking one wearying, frustrating six-month personal journey that I didn’t sign up for.

This unbelievable year started off great, with a launch of my new travel book on February 16 at Books & Books in Coral Gables, I read to a packed group. By then we knew there was a virus in China and Italy, but our President had been downplaying its severity. We were unaware of the extent of the danger already upon us.

With what I thought might be excessive caution, a week later my sons suggested I not fly to New York, which was starting to have problems, so I reluctantly cancelled two appearances. But on March 6, I decided to attend a press luncheon in Miami, and was seated next to a man from Monaco. There had yet to be serious talk about wearing masks and social distancing, and I remember we laughed as we awkwardly bumped elbows instead of shaking hands.

Ten days later I started feeling ill: sniffles, sore throat, low-grade fever; and then, slowly developing, the worst breathing problems I have ever experienced.

Florida still had few cases of Covid, so I hoped, and was told that my problem must be mold, or allergies. We hired a commercial cleaning company, and installed HEPA air filters. But I remained extremely short of breath, coughing and wheezing. Weeks later I tested negative, and grabbed at the questionable verdict.

At one point, I packed a bag in case I had to rush to the hospital, last minute. I did eventually go, but an x-ray showed no pneumonia, and my oxygen levels were borderline, so I returned home to drink liquids and rest. I was warned to stay out of the hospital and to return only if my oxygen levels dropped.

My doctors prescribed steroids and antibiotics, and with breathing exercises and nebulizers my breathing slowly improved. I am in an older cohort and have pre-conditions, so I was especially grateful that I was not among those who died from Covid-19.

But new symptoms evolved and lingered. And after a few months my clinical diagnosis finally became “post-viral syndrome, presumed Covid.”

I’m now considered a “long-hauler.” One of the “invisible sick.” Over six months since my first symptoms I still take steroids and supplements to keep me going, still nap much of the afternoon, still visit doctors, and still take tests to learn what is wrong with my body.

According to the Centers for Disease Control, my journey into this illness is one that hundreds of thousands in the U.S. and millions around the world are also taking. And perhaps up to a third of people who were not sick enough to be hospitalized are enduring long-term effects from this novel virus.

So many symptoms

Survivor Corps, over 100,000 members on social media, partnered with Indiana University, conducted a survey of symptoms. Members reported 98 ailments from Covid-19 — eight times more than what the CDC has listed.

Covid seems to be a vascular disease, with possible damage to almost every organ. Respiratory issues are the most common long-term symptom, but there are neurological issues; and conditions including onset diabetes; lupus; joint inflammation; skin issues; and a heart condition that can lead to strokes or heart attacks.

From my Facebook support groups I have heard laments of brain fog, dizziness, twitching eyes, GI issues, heat intolerance, migraines, nausea, neurological deficits, photosensitivity, pleurisy, poor appetite, shortness of breath, loss of taste and smell, tingling, yellow tongue, red toes, blue lips, bulging veins and curled fingernails.

My own symptoms now include fatigue, hoarseness, wheezing, fizzy nerves, numb limbs, leg aches, shortness of breath, varying blood pressure from very high to very low, night sweats, insomnia, and a strange buzzing in my body (I was relieved when I realized that many long-haul people also have this frightening feeling).

The symptoms come and go

There’s a reason long-term Covid is called the “’rona coaster.” We also refer to it as the beast, the devil and the demon. I can be feeling okay, and ten minutes later, feel like hell. Day to day, we never know how it will go. And many of us have relapsed, many times.

We don’t know how to treat it

The situation is improving, but so far there is still very little research on long-haul Covid-19, and little in the way of policy or programs from the government. But this problem will become a tremendous burden on the healthcare system.

Patients are leading the way in trying to find out what is wrong. I have learned terms like mast-cell activation, dysautonomia, POTS, tachycardia, orthostatic hypotension, gastroparisis and hyperhidrosis. We compare Covid to other viruses, such as ME/chronic fatigue, herpes, Aids and Epstein -Barr: some of which get better with time, some with treatment, and some, with rest. Some viruses just don’t leave, but we don’t yet know with this novel virus. Some long haulers have gotten better. Many haven’t.

Sceptical attitudes

Long-Covid until very recently has been largely ignored or hidden, a forgotten stepchild. It is past time to address the problem.

Many long-haulers go to our doctors with severe medical conditions and are still told we’re having an “anxiety attack.” The medical community, government, and people who are careless about safety protocols need to believe us.

Thank goodness for the growing numbers of support groups online, connecting us with other long-haulers around the world.

It didn’t have to be

This administration has botched not only the mortality of over 200,ooo people, but also the morbidity of millions of us with difficult, possibly chronic conditions. This makes me furious.

Covid-19 long-haul patients are grateful we are not dead. But many of us are still hurting and suffering, with no end in sight.

Meanwhile, as this pandemic continues, please follow basic rules: wear a mask, keep your distance, wash your hands, avoid indoor groups. You don’t want to get this virus in any form, or to give it to others. You don’t want to wonder if you will ever be healthy again.

You don’t want to take this journey.

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