Help! My body is trying to kill me

I have a rare condition called idiopathic subglottic stenosis. Idiopathic means nobody knows why I have it. Subglottic, meaning it occurs in my windpipe underneath my vocal cords, and stenosis, meaning scar tissue continually grows in my windpipe, making it narrower and narrower until I literally whistle when I breathe.

When I say rare I don’t mean ‘rare’ like Debop Y2K Merch, I mean there was a 1 in 400,000 chance I would get this and I got the gold ticket in the health raffle.

I’ve been diagnosed for a little over a year now. In fact, last week I wanted to write about it to celebrate World Rare Disease Day on February 28th, only to find that I was – perhaps appropriately – too ill to even write.

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Despite this, I am extremely fortunate that there is an effective treatment for this incurable disease. Twice in the last year I’ve been in operating rooms, once in Prague, once in Glasgow, being euthanized and having my jaw ripped open and a surgical balloon inflated in my windpipe like a cartoon snake eating a hippopotamus. The first wasn’t as successful, but after my second I was told that a camera was threaded up my nose and down my throat that I “have a nice hole”. It’s true, I breathe wonderfully.

You would think that 12 months is long enough to understand a condition like this. But it’s erratic, like fighting your own shadow, and I’ve been in great denial, treating it like a lingering cold that I couldn’t quite shake off, only to be remedied with Berocca and positive thinking.

When people asked me how I was doing, I replied, “Oh, well, you know, being held together with lip gloss and hairspray”.

Sometimes, if I’m honest, I’ll admit I’ve been “up and down,” but I’ve never explained that up meant I could manage to get out of the house a few hours a day and down meant that I slept 80% of my life away. I was also thankful for the invisibility of my illnesses, which allowed me to maintain the appearance of the cheerful, happy woman I am when I’m healthy, even if it came at a price.

This is not all due to subglottic stenosis. Like many of the estimated 4 million people in the UK who suffer from an autoimmune disease, I have a secondary autoimmune disease, erythema nodosum, which may be triggered by the first condition. This means if I go below a certain dose of steroids my legs will develop angry red lumps and I’ll get so tired I can’t move. My mind is still rattling as it always has, but my body is cement, gravity too strong.

I used to be known for my energy, a whirlwind running around cities with a giant coffee in hand, chatting six to a dozen, making a million plans.

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Always impulsive, spending what little money I had on a plane ticket to get me somewhere else. I crossed the border from Vietnam to China on foot over the Friendship Bridge. I rode night buses across Paraguay and started strength training in muscle gyms in Asuncion. Traveling solo across Siberia, I caught my 2am trains at Russia’s most desolate stations, smelling of dry fish, lard and spilled beer.

In the last year my world has gotten a little smaller. It happens gradually, like a map being folded smaller and smaller. First you limit yourself to the city, then to the neighborhood. Going to your local coffee shop soon is a trip.

After all, you’re staying at home, where you’ll roam around in your extensive selection of pajamas and snuggle up in thick knits until you have to spend weeks in bed. Your own private island for your family to visit. Your toddler snuggles up to you to read, your dog and cat roam across looking for treasured toast crumbs, your husband lies next to you on the pillow and tells you that this will pass, that he loves you.

“You stay at home, where you roam around in your extensive selection of pajamas and snuggle up in thick knits until you have to spend weeks in bed — your own private island that your family visits.” (Image: Newsquest)

Good things have come of it too. I cherish every sweet moment with my son. On a good day, a trip to Queen’s Park and an ice cream afterwards is as good as a week at Disneyland. I haven’t died, I’m not dying, at least not more than everyone else, and every day that I can see him grow, learn and just be with him is magical.

Similarly, if you want to test your marriage, go through an illness phase and see how your partner shows up. My love for my husband is stronger than ever and he feels the same. He loves me as much as ever, even though I have almost nothing to give, medicated, puffy and shiny like a helium balloon version of me. I will never be afraid to grow older with him.

I’ve also mostly stopped being so afraid of other people’s perceptions of me. Instead, I started using my under-performing energetic core as a kind of camouflage for this disease. On better days I dress smartly, wear my nicest or fanciest clothes, I’ve dyed my hair scarlet and fuchsia. I laugh and joke with everyone when I’m in the world because it’s such joyful news.

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I am happy. Beyond the island of my bed and this disease, a truly happy life awaits me. I am fortunate to have access to the NHS and excellent counselors and there are treatments that can help. While there might be some lows, I can believe there might be some highs as well.

I’m lucky that when I’m well again, I’ll be thankful for every single day. I’m also fortunate that I now understand that I need to admit and accept that my body is trying to kill me and that those around me have accepted my vulnerabilities and limitations with kindness and patience.

Still, I feel very happy, often really happy, and that, healthy or not, is even rarer than a 1 in 400,000 gold ticket.