What ‘the new normal’ looks like when you have an autoimmune disorder

…it’s not pretty but it might offer more than we think

On around the 6th January this year something happened to me which hasn’t happened in 10 years. I woke, noticing that groggy feeling of half consciousness, took a few breaths and contemplated getting out of bed. And then, didn’t. Or more — couldn’t. My muscles seem to have filled with lead; and my eyes could barely stay open. My eyebrows were twitching from the sheer bone tiredness. My head felt pressurised, as if in a vice. Ok, I thought. I just won’t get up today.

A lot of us know this feeling. And at one level, in my case at least, it wasn’t totally unwelcomed. Three weeks out from catching Covid and after 10 days rest I’d gone back to ‘cracking on’ with the to-do list of life, even when I didn’t quite feel like it. To suddenly feel so utterly wasted felt like a bit of a relief, as I had no choice now but to stop, totally. There would be no chivying myself along or bargaining with myself that I would feel ok once I got going. On this day I had just one option — bed-bound rest. And back-to-back Too Hot To Handle on Netflix. It was kind of a luxury. A liberation, even. There was nothing to do but nothing.

On another level however, I felt a slow building sense of trepidation in my belly. “We KNOW this feeling,” it said. This feeling when waves of fatigue and flu creep up out of nowhere. When you lose any sense of confidence in your own good health. When you JUST DON’T KNOW when you might feel well, and so can’t predict or plan the future with any sense of certainty.

I know this feeling, because for 5 years or so in my late 20s/early 30s, after a bout of glandular fever, my immune system went into overdrive and I was hit with ME/CFS. For years. Now, it’s worth saying at this point that I hate the name ME/CFS — or Chronic Fatigue Syndrome. I hate it because it gives the very strong impression that fatigue is the main feature of this condition, when in my case, it was anything but. In my case, it would have been more accurate to call it Chronic Flu. Or Chronic Fever. Or Chronic ‘I Just Feel Like Shit.’ It was daily waves of glands swelling and high temperature. It was the mark of a very vigilant immune system going into battle every single day against anything it might perceive a threat.

In a way I kind of love my immune system for its relentless vigilance. I kind of imagine a little army of tiny antibodies shouting orders: “Raise her temperature! Let’s sweat this thing out! And sore throat, YES! That’ll make her cough this thing into oblivion! CHARRRRRRGEEEE.” Every day. You’ve gotta admire the commitment. And if you know me, you’ll know it’s also not that surprising my immune system would behave in this way: if I do something, I do it brilliantly. No half measures. If we’re doing something, we’re doing it right.

So anyway, we’re back in 2022, and I’m not 2 months post-Covid, and my very diligent and impressive immune system is back on high alert. After a decade of soothing and rest, meditation, daily yoga, reworking my career, breathwork, nutritional shifts, my immune system has come out of its fairly relaxed retirement because there is a new enemy in town. Covid is here, and my defences are armed and ready to fight. Even if they take me down in the process.

Now, there are no two ways about it: THIS SUCKS. I had actual, big, serious life plans this year. I had come to rely on my good health, and I planned to take that resilience and do some big things. Levelling up at work. Changing my home. Hiking the West Highland Way. And now, my health is once again no longer reliable. So what the hell do I do about that?

The good thing about this however is that I’m a pro at this. Unlike the thousands of people who are facing Long Covid without a map, I have a map. I’ve done this before. I’ve recovered from the illness the doctors said was unrecoverable. I know what it takes for my body to get better (you can read my particular recipe for recovery here), and I know that in all likelihood I will recover. If, IF, I can avoid getting Covid again. And that’s the kicker.

Because as we career back into ‘the new normal’ where our government has decided Covid is not really happening and we should all just go about our business, the threat level to my immune system — and indeed to everyone’s immune system who has a pre-existing autoimmune condition — is legitimately HIGH. In the two months since I had Covid, I’ve come into contact with it again — TWICE. Both times, my immune system fired up. I didn’t test positive. But my whole body was fighting to make that negative test happen for me. And wiped me out in the process.

Which begs the question: if you’re someone with a compromised immune system, or a pre-existing condition, or at higher risk of Long Covid, what does ‘new normal’ LOOK like? Are we supposed to stay inside and live small for years, until this thing punches itself out? Is everyone really ok with that??

I’m feeling some anger about this new normal, for sure. I’m feeling angry at everyone who doesn’t test before seeing friends. I’m feeling angry at everyone who comes into contact with Covid and doesn’t get a PCR. I know we all want to just not think about it, to put this whole things behind us. Great. Good for you. But while you’re doing that, we’re sat here — terrified.

But I’m also an optimist, so here is some of what the new normal might look like for us; this growing tribe of people whose lives are being stressed and stretched by the policy of ‘living with the virus’…

It might look like a wake up call.

Now, before I dive into the stock spirituality of triumph over adversity, I get that this might be annoying. I used to want to punch the people who would say that the worst things that happen to us might also be the best things that ever happen to us. Try telling me that on the days where my eyes can’t focus and my head is a jangle of inflammation.

But I also know that there is some truth here. Annoyingly. Because what I know for a fact since recovering from ME/CFS is that ill health is one massive portal into living a more aligned and authentic life.

There’s no bullshiting when you have an autoimmune disease. There’s no pushing through. There’s no saying ‘yes’ to anything that isn’t in your best interests. There is only the slow and deliberate work of getting more in tune with yourself, challenging negativity, becoming a ninja at self care, redrawing your own boundaries and accepting nothing less than a warm, relaxed, low stress, high vibe life. In a system determined to make us push and fight and pile on pressure, ill health is one big, fat, unequivocal: no thank you. It’s a deep demand for something else.

Ill health can be a phenomenal act of rebellion against a system that is fundamentally messed up. It can be an invitation to create something new. Slowly, gently, and with a level of awareness that living in good health rarely calls for. Ill health becomes a compass, a barometer. Highly attuned to the people and places that make you feel that little bit better, and those that are sorely lacking.

A friend recently asked me how I recovered from ME/CFS, and the answer is short: move away from what drains you, move towards what inspires you. That’s it. When we’re well, we can handle more of the bad without it taking out our legs. I wonder whether sometimes, that’s actually not a good thing. If we were all more attuned to what’s not working, we might take the work of building something better a whole lot more seriously.

So here’s what the new normal looks like if you have an autoimmune disorder: it’s an every day, every moment call to do life differently. You’ve crossed a line in the sand. There was then, and there is now. You’re the a new world, and yes, it’s sometimes scarier and less certain than the one you left behind. It can sometimes feel smaller, less robust, less grand. But there is also opportunity here. A calling. A purpose. And what you have to offer, might be just what the world needs.

Kim Willis is a writer and strategist living between London and South Wales. She likes dogs. She dislikes pretty much everything about our current government. And if you liked this piece, PLEASE CLAP so more people can see it.