What Long Covid Awareness Means to Me

Preface: If you read this and think Sara seems coherent and fine ,please know this took me 3 days and multiple short 20 minutes sessions laying in bed with the laptop while my Limbic system went into danger mode causing me: to forget my thoughts and words, my heart rate to go to over 120, my feet to go numb, to excessively sweat, insomnia for several nights and requiring a full rest listening to meditation after each writing session for 30 minutes to an hour because I felt a crushing horrible weight sensation in my chest and head.

March 15 is International Long Covid Awareness Day.  I am 20 months post covid infection. I lost my career I loved Centene Corporation , my income, my independence, my appetite, my ability to parent, to take care of my household, to be a partner to my husband, to read, stand, cook, think, talk, walk, write, travel, drive, pretty much everything, like I used to. 

Here's what I gained: The good, the bad and the ugly truth

The Good

• Access to 15+ different types of specialists, most of who were understanding and tried to help but are limited in what they can offer, along with 5 primary care providers. The first PCP was great, believed my symptoms and cleared me to fly to California because as he said " We can't say when you will feel better so you should go ahead and move as planned. A normal case of Covid can last 4 to 6 weeks and symptoms can go on for months."  The next two didn't believe my symptoms were real, talk about unhelpful! The 4th one was really kind but unable to do much for me. The 5th one I started seeing in January so far seems like a good fit.
• Dozens of interventions, supplements, specialized diets, medications, medication dose changes. Some covered by health insurance some not. The most effective treatment for reducing symptoms for many is compounded Low Dose Naltrexone which is NOT COVERED BY INSURANCE and most PCPs are not comfortable prescribing.
• Countless hours each day of meditation, classical music, EFT Tapping to calm my autonomic nervous system. I know that I am my own best healer.
• Immense gratitude for the Long-Term Disability approval I got thanks to my insurance policy from when I was employed at Centene Corporation .
• Helpful Peer Support through iPrevail , Menda Health ,and several online ME/CFS and Long Covid support groups.
• A deep acceptance for living in the moment. We tend to fret about the past and worry about the future but all we really have is right here right now. No matter how bad I feel or how good, I can be present in this moment as it will quickly change to the next moment and on and on.
• Two types of wheelchairs thanks to my amazing The Buy Nothing Project so that I can get to my many doctors' appointments and the occasional push around the neighborhood.
• A permanent disability parking placard. The permanent part I refuse to believe!
• A new appreciation for every little bump in the sidewalk or road now that I get around by being pushed in a wheelchair. Thank you to the many disability advocates who came before me, who fought for sidewalk ramps, disabled parking, and accessible buildings!
• And if you know me, I always find the positive, so this won't surprise you but guess what, " It's really true that happiness comes from within and a good antidepressant!" I continue to feel joy, awe and gratitude daily while I recover and acquire knowledge about how to heal myself. I truly believe I will be able to put this experience and vast new knowledge to a good purpose.

The Bad

• A long list of diagnoses with no effective treatments and no known cures.
• Constantly changing symptoms that impact every bodily system and all my body from my heavy brain fog head to my nerve damaged gut to my numb cold toes. 
• The ability by necessity, not by choice, to spend 22+ hours a day in bed mostly with my eyes closed and never, not once be bored! 
• So many blood draws and clinical tests I lost count.
• Piles of required paperwork that was so overwhelming.
• Multiple denials and appeals, all unsuccessful from Short-Term Disability, Social Security Disability Inusrance Social Security Administration , UnitedHealthcare and Express Scripts by Evernorth for several treatments prescribed by my doctors.

The Ugly Truth

• The understanding that my childhood trauma, asthma, allergies, and lifelong bouts of depression and anxiety made me primed for post viral illness. In fact, I had a similar but shorter-lived experience when I was 16 that forced me to stop attending school for 6 months due to intense fatigue and pain after getting a horrible stomach virus. Oklahoma has the highest rate of Long Covid in the country, no surprise, as they also have the most traumatized people and the highest incarceration rate of any democratic country in the world.
• A first hand understanding of how broken and siloed our health care system and disability systems are. They are not built to care for people with Long Covid/Post Viral Illness. We can and should do better for the millions of people devastated by this mass disabling event. Including those that came before us and have been neglected for years in the Chronic Lime and Myalgic encephalomyelitis/chronic fatigue syndrome communities.
• A deep sadness and heartache for those suffering who don't have the many privileges that I have as a: cis gender, heterosexual, white, English speaking, college educated, high wage earner, married with a supportive family, stable housing, access to high quality school and childcare for my two young kids and access to the best specialized health care available. Even with all this privilege, this is the most difficult thing I have ever done for me and my family. I can't even imagine how much harder it is for historically marginalized and excluded populations like Black, Latino and Native American women experiencing Long Covid at higher rates than White people. Because of unjust discrimination and unequal distribution of resources in our county these hard-working Americans also are more likely to be in low wage jobs with little to no paid sick leave or workplace disability insurance.
• Health insurance maxed out of pocket costs four times in 20 months. Even with good health insurance being sick is really expensive! Once in 2022 after getting Covid in July, twice in 2023 when I lost my job and health insurance and went on my husband's plan. COBRA is so expensive it made more sense to have to pay max out of pocket again instead of the COBRA premiums. Lastly this year,2024, not even a full 3 months into the year I hit the $4,000 max out of pocket.
• A profound sense of loss and invisibility as I am hidden away in my bedroom while everyone else moves on from COVID.
• Covid worsened the shortage of health care professionals and it doesn't seem to be getting better as demand has increased. Waiting several months to up to 10 months to get an appointment is a normal experience.

Call to Action

• News Media talk about the risk and consequences of Post Viral Illness/Long Covid. Start educating the public and medical providers on what to do and not do if they think they have ongoing symptoms caused by COVID. Many of us further harmed ourselves because it took months to years to a get medical providers to believe us and to figure out what we were supposed to do to give us the best chance of recovery.
• Government 1) fund the Long Covid Moonshot, 2) fix the SSDI process to simplify and shorten the time to approval for Long Covid and actually approve people instead of denying the vast majority of people who apply. 3) Provide people severely disabled with Long Covid in-home supports including childcare if they need it so they can actually recover since activity of any type cognitive, emotional, and physical can cause symptoms to worsen. 4) Support/ enforce workplaces in accommodating the return to work of people with Long COVID when they are ready to return to work. 5) Support National Paid Family Leave as so many Americans today have little to no paid sick leave, vacation time or any other way of taking paid time away from work if they get Long COVID.
• Healthcare Professionals you have the ability to make us feel supported or to break our spririt. Educate yourself and believe your patients when they come to you with a laundry list of symptoms no test can explain. Thank you for showing up each day to work to help us, support us and give us hope. Some helpful websites to better support your patients:Post-COVID Conditions: Information for Healthcare Providers (cdc.gov)Dysautonomia International: For Physicians & Other Medical ProfessionalsInformation for Healthcare Providers | ME/CFS | CDCHealthcare Professionals - Bateman Horne Center
• Individuals and Communities take steps to protect yourself from getting COVID! If you learn of someone you know with Long Covid first believe their experience. Do not say you know how they feel or that you are also always exhausted too, we are tired of hearing this! Instead ask what you can do to help. Can you bring over meals, check in on them (as it can be a very lonely illness), pick up prescriptions, watch their kids for a few hours, pick up groceries, do some household chores, drive them to an appointment? Having supportive family, employer, neighbors and friends makes a huge difference in moving from despair to hope. COVID and Public Health should not be a partisan issue but very much are. Please vote up and down the ticket in November for Democrats. Too many Republicans don't believe in the harm of Long Covid, are against COVID vaccinations and prevention measures to stop more people from getting Long COVID. Most do not support affordable access to health care for every American through expanded Medicaid, Medicare and Obama Care. These views are hurtful and actually harmful in a time when so many Americans are sick, dying or disabled because of COVID.
• My fellow humans recovering from Post Viral Illnesses I hate that this happened to you. It is not your fault and you did not deserve this. You are not alone, you are enough, you are an amazing human who is doing the best you can with a very difficult unpredictable chronic illness. Every persons post viral illness experience is different, I can't assume to know your journey even as I live through my own. May you know that you are your own best healer and advocate. I wish for you moments of joy, awe, beauty and laughter each day and that you never lose hope towards improved quality of life and recovery.
• Disclaimer: these are my own thoughts and feelings; I do not claim to speak for others with similar conditions. This is not medical advice. Always consult a licensed medical provider to discuss your symptoms and health care needs.