Awkward stories: hypersensitivity vasculitis in Mexico

Awkward stories: hypersensitivity vasculitis in Mexico

This business of having a body requires a balance. More often than I’d like, I find myself wondering how to be careful, curative, and kind during moments of weakness, while not letting a downturn completely overtake me. I get sick and hurt myself a lot, but for the most part, I think I’m doing okay. Still – I don’t think I’ll be the same after having hypersensitivity vasculitis, and the surprise, fear, and conflict it brought when it set in.

Local chocolate and mysterious bug bites

My first day in Oaxaca City, Mexico: beautiful streets filled with art, mezcal tastings and organic, local chocolate. In the evening, I returned to my Airbnb and noticed a few raised red bumps around my ankles and lower calves. Thinking it was nothing more than a slightly dramatic form of swelling from all the walking, or maybe some mysterious bug bites, I lifted my legs up on the wall to stretch and flush and then went to sleep. There were more in the morning.

Over the next three days, my feet and legs became covered in red spots. Some were the size of pinpricks, others much more substantial, seemingly formed from the smaller ones bleeding together. Frantic googling identified the small spots as petechiae and the larger compounded ones as purpura. I read on – feeling more informed, but not any less alarmed. Although appearing on the skin, this wasn’t an irritation but a collection of hemorrhages indicating a more profound systemic issue. But there was no way of knowing what this systemic issue could be. The thing is, petechiae and purpura can be symptoms of a multitude of possible illnesses: anything from a low-impact allergic reaction to a blood disorder to a dangerous infection to cancer. This isn’t exactly what you want to read when you have ever-encroaching red spots blanketing your lower body and are several days and thousands of miles away from adequate medical care.

During the days, I was fine, mostly calm. Keeping a brave face as I ticked off the long list of to-do’s and to-eats. But, the nights were different; each bringing more inflammation and fear. My Achilles tendons became swollen, and it was painful to walk. When the spots made their way up to my groin, it was hard not to panic that something could be happening to my reproductive system. As the purpura spread, I followed the darkest path of possibility – crying myself to sleep, wondering if it was being caused by Meningococcal meningitis and that I might not wake up. This was serious, and I remained unsure and out of control, feeling alone.

Who needs friends? I do

Now, technically, I wasn’t alone – but the illness was isolating. I was in Oaxaca with my sister, her boyfriend, and Rose* – a friend I’d met as part of a group I’d traveled the world together with for a year. While the first two supported me like you’d hope family would, Rose surprised me with her absolute lack of compassion. Over the course of that year, I’d learned she was someone who wouldn’t compromise. It was a quality I both admired and detested in her – Rose only ever did exactly what she wanted. She expected nothing, and made clear no one should expect anything of her in return. Going into this trip, I thought I was prepared. I knew that as long as I didn’t need to ask her for anything, the trip should go off without a hitch. But then, the spots came. It turns out I did need to ask her for something – consideration. But for a request so small – the consequences were worse than I could have imagined.

Rose resented me for the petechiae and purpura, saw my limitations as encroaching on her rights to have a good time. When I asked for some small accommodations or patience, she flat out refused. I felt myself needing to close off from her. Space was the only thing that could keep the peace. I already had so much on my mind; grappling with the shitty friendship choices I’d made would have to wait for another day.

One night, while gingerly applying lotions to my swollen and spotted legs, Rose flew into our room in a rage and demanded I come to fix something for her in the bathroom, since ‘I wasn’t doing anything important.’ I came to help – but when I asked for the time to put on pants and for her to be slightly kinder in the way she was speaking to me, she lashed out.

“That’s ridiculous,’ she snapped. “The problem is you’re being overly sensitive and unfairly taking it out on me.”

I was dumbfounded. I felt like garbage and was incredibly scared about what could be happening to me, but had still put aside self-care to assist her. Now, not only was she showing no appreciation – she was expecting I control my emotions to prioritize her.

“Well, of course I’m sensitive,” was all I could get out.

I couldn’t stop thinking about how, if this had happened to her instead, I would have had her back. But even after a year of intensive time together – and in the face of a truly troubling health issue – Rose couldn’t make space for me. This was someone who gave no shits about my health or healing, who lacked either the desire or capacity to be there for me. This was the end of our friendship. The emotional tribulation was the rotten cherry on the top of this completely spoiled holiday. But it wouldn’t get any easier from there.

What would the doctors say?

On Thursday evening, we left Oaxaca and returned to Mexico City, where I was living. On Friday morning, I went to the emergency room. I sat on the cold metal examination table, barely insulated by the sterile paper. By this time the petechiae and purpura had spread to my stomach and the underside of my breasts.

I took off my socks and leggings, lifted up the underwire of my bra and told my story, again, and again, to five different groups of doctors. They all walked into the room in masks and gloves. Almost no one introduced themselves, but I was prone to trust, in need of help. I didn’t have much of a choice. It wasn’t until later that I realized that the constant flow of new physicians should have indicated something serious.

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A nurse in the last group of medics told me they had diagnosed the issue. She confirmed, over, and over again, it was just an allergic reaction. She said she’d sent photos to the doctor, and he was coming down to confirm the best treatment. But that was just a ploy to keep me calm, an unnecessary lie.

I was always going to lose it when Dr. Valencia, the head of Internal Medicine, told me that the way my legs looked, all signs pointed to a blood platelet count so low that he couldn’t let me back out into the world. I could stub a toe and bleed to death. I’d need to be hospitalized and he couldn’t give me an idea of how long.

‘A day, 5 days, two weeks?’ I asked.

‘I can’t say, ‘ he said.

And let the tests begin

The preliminary panels and bloodwork were called. They would be the first of many, many tests, Dr. Valencia told me. I should be prepared. They gave me a minute to catch my breath, dry my tears, and make a plan.

My mom texted to ask how my ‘leg cooties’ were doing, and I called her back to give her an update – managing my own panic to minimize hers. My dad, who sold medical products for a time, and fashions himself something of an amateur physician, called back with a list of tests I should make sure they were performing. While I was on the phone, the nurses came in for the blood for the initial sample.

A screw loose – everything is becoming unstable

Then they moved me to a private room to make sure I was more comfortable. The bed in the private room must have had a screw loose because it wobbled uncontrollably almost anytime I took a breath. I was living a metaphor – at that moment, nothing was stable.

Careening back and forth in the hospital bed, I was stuck in a loop of fear and frustration, blaming myself for whatever it was that caused this. I wondered what I was doing here, why I kept chasing a life of exploration and adventure that was clearly backfiring on me. Unemployed and uninsured, I was terrified that this experience would bankrupt me and debilitate me to the point where I couldn’t find dynamic work again.

Could I trust doctors I couldn’t communicate with freely – especially when one of their staff felt so comfortable lying to me? The range of possibilities loomed. I couldn’t do anything but prepare myself for the worst outcomes, the way my life could change forever – get smaller, restricted by harsh medications and strict elimination diets. And I wondered who, if anyone, I should call. I had friends and loved ones all over the world – but I still felt so alone, unsure about bothering any of them with an update, when there was nothing they could do but worry along with me.

Two hours later, I was notified that the results of the blood panel were in, but the doctor couldn’t return for another hour or so to review them. I waited anxiously.

Dr. Valencia and Dr. Reyes, his young female colleague with slightly better English, wandered up to the admin desk and spent what seemed like an eternity looking over the paperwork. Then they meandered over to my bed. Somehow, surprising the whole staff, my platelet levels were normal. Everything was within the standard ranges except for a high leukocyte (white blood cell) count.

The nurse didn’t lie: I had vasculitis

It was, in fact, an allergic reaction. The nurse who thought she was lying to me (out of kindness, but still lying) wasn’t. It was the most intense manifestation they’d seen of hypersensitivity vasculitis.

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I was free to leave the hospital, go about my business and enjoy all the events I’d planned for my sister. Rose never checked in to see how I was doing. I didn’t hear from her until she reached out a few days later to ask me to run an errand for her. I was down a friend, but I was reasonably healthy.

So, if it wasn’t the platelets, what did this to me, then? The white blood cells. The mechanism that the body uses to fight disease was identifying my blood vessels as the enemy and attacking.

But why? I’ll never know. So many things can cause the response. Reactions to food and medications, immune confusion from ongoing infections, even intense emotional episodes can kickstart the spots. It’s notorious for being anonymous, this type of vasculitis.

For me, it could have been any of those things. I’d been traveling nomadically for a year and a half before the episode and had sustained my fair share of infections, viral and bacterial. I’d been processing some emotional trauma through therapy and traditional Mexican sweat lodges and had experienced relatively intense sessions of each in the days before the trip to Oaxaca City. To say nothing of some late nights in the previous few weeks, drinking and dancing until dawn.

Regardless of what had caused it – vasculitis is an autoimmune response. I can go into remission, but I’ll never be fully cured. My ability to fight disease has been compromised. My body was attacking itself, and I’ve had to calm it down with a month and a half of high-dose steroids. Now, I need to rebuild my immune system – but not too well. That could put me right back where I started. Healing and preventing further outbreaks have become my new obsession. Going forward, I’m going to need a new lifestyle and a lot of luck.

I realize that, already, I’m luckier than most. In the end, I didn’t have to be hospitalized. But still – one day I was healthy, and now I am not. In the process of being diagnosed, I walked around looking and feeling like I had the plague. It’s hard not to be shaken by that. But, having a body is a balance. Healing an illness requires compassion and toughness.

As brilliant artist, theorist, and patrona of my beloved Mexico City, Frida Kahlo, once said about her own struggles with wellness – “I think that little by little, I’ll be able to solve my problems and survive.”

*Name changed