DO’s and DON’Ts for the LONG HAUL
When COVID-19 began its descent into our existence in spring 2020, there were a lot of unknowns. Mainly, if I get this, will I end up in the ICU on a ventilator eventually dying alone while my family Face Times their goodbyes? Will I lose a loved one this way? For doom scrollers like me, there were plenty of stories like this to be found on every available media, and the fear was palpable.
Then came Part Two. If you made it through COVID, there was the possibility that symptoms could stay with you once the virus had cleared. As the months passed, more and more people were experiencing horrific “long-haul” symptoms that profoundly impacted their quality of life.
Once it became clear that COVID hospitalizations were rare, and survival rates high, my fears became 100% focused on long-haul COVID. I worked in a functional medicine practice during COVID, and this was a common concern among patients. Most of them already suffered from chronic illness and did not want the immune system flare that would likely accompany a COVID infection. I definitely fell into this category, as I was slowly but surely making my way out of the “hole” where I had spent the last 10 years suffering from mold illness. I had already been a long-hauler, suffering many of the symptoms that now seemed to be afflicting COVID patients; dizziness, brain fog, heachaches, extreme fatigue, feeling like I was going to pass out, and panic attacks. And I had experienced very similar interactions with doctors that COVID patients were seeing; the “your labs are fine, it must be anxiety” response, the “are you sure you’re really sick?” question and the “maybe you just don’t want to get better” dismissal. I had been at the depths of hell, wondering why this was happening to me, and when it was going to be over. Every day, I woke up hoping that this would be the day that everything would turn around. But it didn’t happen that way for me. Once the mold was removed I felt better, but my immune system was slow to recover. And any additional insult, be it stress, viruses, allergies, re-exposure to mold, was enough to trigger a setback. So of course, I feared COVID, the mother of all viruses.
Luckily, I made it through two rounds of COVID-19 with no long-term repercussions that I am aware of. If anything, the slower pace of the pandemic gave me the space I needed to really make progress in feeling better. But as I read about the long-haulers, I feel empathy for the suffering that I know they are enduring. There is nothing worse than the loneliness and desperation you feel when your body is failing you, and there is no end in sight. Until my “long-haul” I always believed there was a treatment for every diagnosis, i.e. if you have strep throat you took penicillin. If only it were that easy.
I made SO MANY mistakes in my quest to get better. I have seen long-hauler discussion groups where people are trying the same things I did, most of which did not go very well for me. I have put together a list of DOs and DON’Ts for long-haulers trying to recover, based on my own journey:
DO give yourself time. This is number one, the most important piece of advice. Healing takes time. You may want to feel better RIGHT NOW, but that may not be realistic for your body. Accept it, try to limit your activities and responsibilities as much as possible, and wait it out. Your body will reward you for it. It has been years for me, but I am slowly but steadily making progress. It is what it is.
DO NOT compare yourself to others. As in, “She had COVID a month ago and is running a 10K. I can barely get out of bed. What is wrong with me?” There are so many factors, too many to list. But genetics, previous latent-now-reactivated infections, your body’s ability to detox, nutrition, and other comorbidities all play a role. (This is why I LOVE functional medicine…my traditional labs showed no issues, so I thought I was crazy. My functional labs showed high candida, Epstein-Barr, low vitamin levels, the celiac gene, mold exposure, poor gut function and high allergy levels. All reasons that I might not feel so good.) Social media provides easy access to everyone else’s highlight reels, so you may want to stay away, especially on bad days.
DO NOT take chances on a quick fix. I was the queen of this one during my mold illness, to the point my husband said I was not allowed to try anything else without a doctor’s approval. A prime example is when I went to get a nutrient IV, which I hoped would jump start my recovery. I wasn’t even out of the chair when I felt burning all over my body, particularly in my bladder. I peed at least 50 times, to the point I was extremely dehydrated, and in miserable pain. That was $200 that literally went down the drain. I also tried anxiety medication, which I hoped would calm me down. They had the opposite effect, and I had horrific panic attacks. My body was so hypersensitive, that it treated everything like an invader.
DO use caution when it comes to who you trust to help you, especially when you are paying them. I saw physical therapists, occupational therapists, chiropractors, acupuncturists, a hypnotist and numerous doctors. Several promised they would help me, but most did not. One practitioner insisted that her $115 bottle of collagen would cure all my ills. When I said it didn’t work, she told me I needed to take it for at least 90 days. No thank you. Different things work for different people, so I do believe that you need to try new things…but just be careful.
DO consider the mental aspect of your physical health. At my lowest, I was hopeless, depressed, anxious and hypersensitive. Any weird sensation in my body would set off a “wave” of panic that undoubtedly triggered my sympathetic nervous system. (Sympathetic is fight or flight, parasympathetic is calming.) Symptoms escalate when your body is in a state of alarm. I am currently researching the vagus nerve, which is connected to the parasympathetic nervous system. Certain things can calm the nerve, including laughing, singing out loud, and getting into a state of “flow” (where you are so involved in an activity that you lose track of time). I even read that a cat’s purr can have this effect, and have noticed an improvement since my kitten, George, started sleeping on my head. It is almost like he is infusing me with his calm. My therapist has also helped, although she has admitted she wishes she could do more. I think just talking to her has helped enormously.
DO NOT force a positive mindset. This drives me crazy. “You cannot feel better until you believe it will happen.” Whatever. I struggled with this immensely after purchasing a book that drove this point home. Of course I wanted to believe I would feel better…but after all I had been through, why would I? My therapist was very validating with this, saying that “the mind just doesn’t work that way.” My inability to stay positive was just one more thing that I felt I was failing at.
DO your own research. I spent countless hours perusing articles on the internet and reading books seeking information. Knowledge is power, and the more you know, the more you can advocate for yourself. As a health coach, one of my main focuses is to help clients learn about themselves, whether it be through tests or by steering them to trustworthy resources. In many cases, something will click. No one knows your body like you do, so the more information you process, the more likely you are to find a nugget that applies to you.
During my illness, I believed there had to be a reason for what I was going through. I ended up becoming a certified functional medicine health coach, in the hope of helping people feeling dismissed, hopeless and alone in their medical battles. I did not want anyone to feel the way I did when I went through it. It saddens me to see what long-haulers are going through, and how it is impacting them and their loved ones. But it is heartening to see the long-haul groups, the connections, and the advocacy for patients suffering from “mystery” symptoms. There is strength in numbers, and the medical community is no longer able to brush off patients for whom they have no answers.
