Chronic: a little word I keep underestimating

My husband and I both have invisible illnesses. They're so invisible that we sometimes almost forget about them - until they sneak up and painfully remind us that they're still very much present

“All you do is sleep and watch TV! We never do anything together anymore! Get up and DO SOMETHING!” I yelled at Rich last week. I was fed up. He’d been mostly in a horizontal position for a week, only getting up to do chores before heading straight back to the couch or bed.

“Other couples do stuff together!” I continued yelling, “and we never do!”

“How do you know what other couples do?” he called back, getting frustrated.

“I just know, okay?” I screamed before bursting into tears.

I didn’t know what was going on. As any couple knows, every relationship goes through phases of being in either a really great place, an ordinary one or a bad one. We had gone from really great to terrible in 0.5 seconds, and I had no idea why.

It took me a while (and editing my next book which will dive deeply into the topic) before it dawned on me: we were each in the throes of our respective chronic illnesses, and they had snuck up on both of us.

I was having one of my PMDD-induced fits of rage, combined with the onset of the SADs (=seasonal affective disorder) caused by the shorter, darker days and sudden appearance of winter.

Rich has late-stage Lyme disease; we suspect that he was first infected with the bacteria as an 8-year old child. He wasn’t officially diagnosed until 55 years later when he became seriously ill in 2017. An early diagnosis and treatment will improve the chances of recovery in any disease, and Lyme disease is no exception. Since Rich’s diagnosis came exceptionally late his treatment has only partially been successful. Despite an initial 6 months-long treatment with antibiotics he still gets Lyme symptoms. He’s improved dramatically, but he didn’t fully recover; his condition is sometimes referred to as Post-Treatment Lyme Disease Syndrome, and he will live with it for the rest of his life.

The most common symptoms he struggles with are difficulty sleeping, brain fog, memory problems, depression, and severe joint pain. When he couldn’t get out of bed last week it wasn’t because he was lazy; it was due to fatigue and pain caused by his illness.

Our respective conditions don’t exactly go well together. His memory problems and brain fog trigger my anxiety (is he getting dementia?); my hormone-related mood swings stress him out which in turn makes his symptoms worse; he has trouble communicating, which feeds my tendency to assume the worst.

And there is something else. I don’t know if other people with chronic illnesses do this as well, but I still secretly hope that, if we do everything right, we will be cured.

I have always had the desire to “figure things out”. Identify the problem, solve it, be done. I blame the German in me: most people I grew up with were big fans of not dwelling on problems. Get over it and move on, there’s work to be done; stop overanalyzing everything to death. Some problems can be dealt with that way; chronic illness cannot.

However, we live in a society that loves to promise the impossible: that every single one of us can become thin, rich, successful and healthy if we just buy the right products, join the right networks, hustle our butts off and eat the right foods. There’s a devious breed of illness influencers that promises recovery from any illness, no matter how severe, if you completely change your lifestyle and follow their advice.

Less drastic, but just as dangerous are people trying to sell you any diet that guarantees impossible results and a cure of any health condition you may suffer from.

It’s evil because it profits from desperate people willing to try anything to get better, and it may cause irreparable damage if people forgo lifesaving treatment in favour of the latest fad. When it inevitably fails, there’s an easy explanation: you didn’t do it right. It’s your fault if you didn’t get there. You just haven’t tried hard enough, or invested enough money, or done exactly what you were supposed to do.

While I’m pretty immune to diet pushers, I still fall for the allure of believing that we can “overcome” our illnesses. Is it any wonder? You just have to do a quick search on Amazon for popular books about depression, and the headlines that jump out at you overwhelmingly include phrases such as “overcome depression”, “beat anxiety and depression”, “get over anxiety and depression”, “reverse the course of depression”, “the depression cure” - you get the picture.

When my friend was off work for burnout earlier this year, he was put on antidepressants for a few months and did a handful of therapy sessions. He has since stopped therapy and quit his meds, and he says he’s feeling great again. While I know that everybody’s situation is completely different and that I shouldn’t compare, I sometimes still do.

It’s hard not to get your hopes up (and subsequently crushed) when you’re surrounded by the message that you can beat anything you want.

Here’s the reality of our lives and the people we know who have a chronic illness: there are lots of things you can do to make your life and condition better. My top 5 are my meds, living alcohol-free, therapy, time spent outside, and my dogs. There are many more, but these 5 are non-negotiable.
My husband’s 5 are rest, no stress, his animals, watching TV, and spending time with his friends. Again, there are many more factors, but these are his most important ones.

(A quick list of more good stuff: sunshine, water, yoga, books, hobbies, naps, a purring cat on your chest, cookies for breakfast, hot coffee, hot tea, Christmas movies, Yellowstone, having something to look forward to, working on projects, friends, hiking, skiing, kayaking, trail-ride-hikes, long phone conversations with loved ones, writing in bed, dog kisses, listening to a good story on car rides, chocolate, cooking stews and soups, sleeping, dressing up for absolutely no reason, decorating, fresh sheets, hot water bottles, meditation, fulfilling work, random acts of kindness, daydreaming, puppies, early mornings, no hangovers, talking quietly in bed in the dark, hugs, saying thanks.)

We are doing really well - but we are not “cured”. Life happens and stress is unavoidable, and from time to time we will get knocked down by our invisible illnesses.
We have been living with them for most of our lives, and it looks like we will spend the rest of our lives with them as well.

It’s okay. It could be a lot worse. But it’s important to accept that they are here to stay. There is no defeat in this acceptance - on the contrary, it’s liberating.

Continually hoping and being disappointed and feeling guilty for not having tried harder is incredibly exhausting. Acceptance is where it’s at - it’s your ticket to freedom!

Now I just have to remember next time before I’m spiralling that our invisible illnesses are very much alive and kicking, no matter how long we get a reprieve from them before they make an appearance again. They are part of our lives.

And that’s okay.

Happy Monday my loves!
💙 Miriam

P.S. To my American friends: well done on the midterms, you guys worked a miracle! So proud of you and hopeful for the future!