Sometimes the only thing left is a story.

I’ve been thinking a lot about the stories we choose to tell, and the ones we don’t.

One that I usually don’t tell, or only tell bits and pieces of, is what life is like as a 25-year-old living with a chronic illness.

When I look at myself, I see the black bags from a lifelong struggle with sleep that has morphed into a vicious insomnia over the past year. I see the itchy, painful eyes as my body mistakes my eye tissue for thyroid tissue and starts to attack them too. I see years’ worth of acne scars, always the first sign when I eat a food that I shouldn’t. I see the 15 pounds I’ve lost over the last six months, all while having an almost insatiable appetite – to the point where the feeling of hunger starts to permeate every aspect of my life, leaving me with the overwhelming sensation that I will never be full, never satisfied. I see the times when my body temperature drops and it takes hours to get warm again. Which is unsettling, especially when it happens in a place like Africa, especially for someone who spent most of their life living through New England winters.

This year marks the (almost) 10-year anniversary of the beginning of my symptoms. Which have spanned almost anything you can think of: exhaustion, brain fog, depression, anxiety, panic attacks, mood swings, weight loss and gain, sleeping too much, or not being able to sleep at all, persistent sore throats, severe body aches and pains, being thirsty all the time, constantly craving salt as my depleted adrenal system tries to limp along in the wake of all the damage.

In these 10 years of symptoms, I have been misdiagnosed 4 times. I have seen 6 doctors, 6 psychologists, and 1 psychiatrist. I have been diagnosed with 35 food intolerances, severe nutrient deficiencies (to the point that my body started to break down my bones, desperate for any nutrients it could find). I had to drastically change my lifestyle and diet, just to keep myself functioning at the bare minimum of normality. I have racked up thousands of dollars of medical debt (despite having health insurance for most of the time, and having several long battles with my insurance company – thank you, America), had countless blood tests for everything from coeliac to Lyme’s disease to anaemia. And all the while, I had to constantly advocate for myself with doctors when tests would come back, time after time, only slightly off from normal. It is exhausting to try and convince people that you are not well. That you see most people your age living their lives with energy, eating whatever they want, thinking clearly. And you get angry at yourself for not being able to have those things too, those things that seem to come so easily to other people. And at a certain point you start to think, maybe it is all in your head. Which makes you feel even worse. Because if it is all in your head, why can’t you make it go away?

And in the two years since I finally figured out what was wrong – Hashimoto’s Thyroiditis (an autoimmune disorder where the body attacks and eventually destroys the thyroid gland, ultimately impacting most other systems in the body, as almost every cell in the body has receptors for thyroid hormones) – I have made some peace with this disease, found ways to live with it, to explain to people what it meant, in the most basic terms. But the reality is that I have never really let it sink in. That I will have this for the rest of my life. That it may lead to complications like other autoimmune diseases, heart problems, cancer. That no matter what I do or where I go, it will always need to be in the back of my mind. I have never let myself mourn the healthy self, healthy life I will never have. I was too focused on trying to fix it, to find the magic solution. Until this year.

I thought that maybe the diet and lifestyle overhaul was enough. But despite all those changes, this year has been one of the worst so far. And it’s also, of course, the year I decided it was a good idea to go back to school. For most of this year, I have had almost constant heart palpitations. I have barely slept for almost 365 days, and if I did, it was never restful because my elevated heart rate made it impossible for my body to fully relax. Most days, it was a miracle if I could concentrate on anything for more than a few minutes, or follow a train of thought to the end without losing it. Which has been unbelievably frustrating for me, as someone who has always relied on my memory. It has been a year characterised by a bizarre manic exhaustion. And sometimes the pain was so bad, it left me feeling trapped in my own body, with no escape but to curl up on the floor, exhausted, because everything hurt and I’d run out of answers.

I would like to think that there is some lesson to be learned from this. But after a year of unrelenting symptoms, with only short periods of minimal relief, I’m not sure where to look for those answers anymore. Honestly, I’m just tired. Tired of pretending that everything is all right. Tired of being strong. If I can take one positive thing away from this year, maybe it is just this, finally being able to tell this story. Because not only is this disease exhausting, it’s also incredibly isolating. And I’m starting to see that there is no real bravery in suffering in silence the way that we’re taught: when you have no other options, maybe the only thing to do is finally break that silence.

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