Dear COVID Long Haulers – Don’t Give Up

Sometimes even to live is an act of courage.

Lucius Annaeus Seneca

Dear COVID Long Haulers,

Welcome to my club. I’m so sorry you acquired membership to this motley band of chronic illness warriors, but you’re here now, so as newbies I’d like to show you around, and help you settle in.

1. Let’s talk about the most important thing you need to know: This is not all in your head.

All of these vague symptoms and specific ones, the way that your energy and function and pain levels and cognition and mental health change from day to day – it’s real – no matter how many doctors and specialists and natural medicine practitioners and family and friends tell you there’s nothing wrong, or you should be feeling better by now and maybe it’s just anxiety or depression, or that maybe you’re just doing this for attention, or to avoid responsibility (or whatever other lame, cruel and otherwise uninformed comment is sent your way).

You know your own body. You know when it’s misbehaving. You’re not imagining any of this. And it sucks, but the truth is (as many of the members of my chronic illness club with our spurious diagnoses of ME/CFS/Post Viral Syndrome/Late Stage Lyme/Autoimmune/Bad Mental Attitude/Ad Nauseum) will tell you is that doctors don’t know everything, and until now, no-one has really spent much money or time trying to figure out why some people are exposed to a triggering illness or event and go downhill and are never the same again.

It’s also vital that you don’t give up. Recovery is possible, or at least recovery of enough function to live a better life. I live with limitations, I live with chronic illness and pain, but I LIVE – and I have figured out a range of things that have helped me claw my way back to mostly functional, and where I have hope, joy, purpose and meaning in my life again, rather than just barely existing and being in constant survival mode. Many of the things my doctors told me would never heal HAVE healed or improved for me. Maintain hope. Don’t listen to the doom and gloom prognoses. .

2. Find A Wholistic or Functional and Integrative Medicine Practitioner Who Believes In You

Maybe your doctor knows what to look for (they don’t always!) and has figured out that you have abnormal stuff going on. If they don’t, find someone who does. How do you do that? Google or join some online forums with other COVID or chronic illness warriors and ask for recommendations. Sadly, you’ll soon see that they are in short supply. In fact, many are actively persecuted or end up having limitations put on the work that they do (go ask the Lyme community about this – in Australia I’ve lost seven doctors to restrictions imposed upon them by the medical board so that they could no longer treat people like me, or by them being deregistered). If you find one, treat them like gold. Find someone who tells you they don’t know everything, but who is prepared to research, collaborate and learn. Someone who is willing to try on your behalf. Someone who is in your corner. We’re all learning, physicians included. Why do you need some kind of medical practitioner? You won’t be able to manage as well on your own, and having someone on your side who believes in the potential for you to recover some kind of function or manage your symptoms and pain better gives you hope, strategies and access to ideas and information beyond what you might find on your own.

3. Know That Everyone’s Pathway To Recovery Is Different

Yeah, that sucks, I know. There is no one cure. There is no treatment or diet or therapy that works for everyone. We are all biodiverse individuals, and what is happening in our bodies is unique to our own genetics, even though we may share many things in common with other people in this dodgy club to which you now belong. Be mindful. Pay attention to what you put into and onto your body. Notice how it responds. Get a bit science-y. You can no longer afford to be ignorant of the functions of your body. Too ill to even think straight? Start with hydration, rest, and anything that reduces inflammation in your body. Avoid sugar and junk food, comforting as it is. You need better nutrition if you’re ever going to heal. Use stretching and gentle movement. DO NOT DO CRAZY AMOUNTS OF EXERCISE OR ACTIVITY. Know your limits. Work within them and be conservative.

There is actually a long list of things you can try, on your road to getting your life back (which might not ever look like the life you had before – be okay with that, because I promise, after a long time of illness any recovery of function feels like a major victory and you WILL be satisfied with that victory). Don’t be depressed at this list – feel into the potential of it and how that might work for you. Think nutrition, anti-inflammatory diets and lifestyles, herbs, anti-virals and anti-bacterials and anti-microbials, bio-resonance and Rife machines, supplements, detoxification, Ayurveda, essential oils, meditation, yoga, acupuncture, kinesiology, chiropractory, cold water therapy, ozone therapy, intravenous Vit C, hormone support, liver support, gut repair, rest, fresh air and sunshine, reducing stress, human connection, therapy, art therapy, making changes to your life that make you happier, breathwork, philosophy (the Stoics have really helped me) and I am sure there are many more, but that’s a start. (Have I tried all of these? Yes, and more. Why? I have NEVER given up on myself.) You’ll need to try these, slowly and one at a time, to see how your body responds.

Eventually you’ll end up with a toolkit of things that can help you, and that you can turn to if you experience a bump in the road once you start to improve and end up overdoing it or experiencing a setback. Everyone who is a long-term member of our club is now nodding their head in agreement, because this is a two steps forward one step (or more) back kind of a journey. Get your head around that too. Recovery is never linear.

4. Take Control Back

This might sound crazy, right? You feel so out of control right now. You feel like your body has become this alien, misbehaving THING. You just want your old life back. It’s not fair!!!

Yeah, I know. It’s not. But it is what it is, and fighting against the truth of your current situation will only make you more exhausted and miserable. You DO have control over something, and that is your attitude. Choose to stay curious. Choose to keep trying. Choose to rest if you need to, or to fall apart momentarily but to also never give up on yourself. I have seen SO MANY PEOPLE in the chronic illness community improve and get back to living better.

Choose to be an active participant in your ongoing recovery. Adopt a Warrior mindset. Feel into the strength that has always been inside you. The one upside of your new situation is that it will crack you wide open. Here is where you take a different road to other people, and on this road you’ll learn so much about yourself. That has been one of the best parts of this journey for me. I have become so much more intuitive, strong, kind, compassionate, wise and self-aware through this whole f*cked-up situation that is chronic illness.

5. Accept That Things Are Different Now

For so long, all I wanted was my old life back. To go back to the person I was pre-illness. But that won’t ever happen. Even if I make a full recovery, I will never be the same. Chronic illness changes you.

You may still make a full recovery. Me? After 30 years, I finally recognise that I will live with the ramifications of illness for the rest of my life. That might be true for you too. Please, don’t get depressed about that. I’m not. What does that mean? It means that even when I am well, and functioning more normally, I have to be mindful. I don’t have the reserves in my tank that other people do. I need to make different choices. I can’t live on junk food, and treat my body with ignorance. I can’t push myself stupidly. I can’t make choices to make other people happy, at the expense of myself. I will have better times, and times where my illness flares or my immune system fails me and something else goes wrong… I will always need to go back to my toolkit of Nicole 101 Wellness Techniques in order to maintain or regain function. This doesn’t mean I can’t be well – it just means I can’t ever take my health for granted, like I did before I got sick.

Final Thoughts

One positive to come out of Long COVID is that because so many people have been affected, governments and the medical profession are finally starting to pay attention, and to commit money and time to research people like us, and why we don’t recover after an acute illness. I expect breakthroughs. Maybe, one day, even miracles.

Until then, this is a long haul event. You’ll need to dig deep, to find your resilience, and to persevere. It will be worth it. You are worth it. There is a whole silent army of people like us – people who understand, because they are living with this too.

I have been written off by many health practitioners, and have nearly died, more times than I care to recall. But I am still here. I have healed and regained function in areas of my life where I was told there was no fix. If that can be true for me, it can be true for you.

I’m always here for you. You matter to me. Here on my blog you’ll find lots of free resources like guided meditations to help support you on your journey, and a whole community of people who care.

Life is worth fighting for, and your life matters. I’m cheering you on, I’m holding you in my prayers and meditations. I’m in your corner. I’m wishing you well.

Sending you gentle hugs, all my love, Nicole xx