Living with an autoimmune disease

In a new job, I had an attack. Explaining my disease, I felt as though I was confessing a dirty secret.

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Every 6 to 8 weeks, from about 14 years old, I’d get really sick. It would always start slow. First, I’d notice my stomach felt bloated and tender. Next, I’d start to feel really faint. And then a stabbing pain would come and go, increasing in frequency and intensity — right before the nausea would creep up the back of my neck. I’d then spend the next 24–48 hours vomiting and delirious.

“Not again Cassidy.”

Those words are imprinted on my soul. I can still hear the exact tone of voice my mother uttered them in. It was a mix of frustration and fear. Why did this keep happening? How had she failed her daughter? Without realising, she took her anguish out on me — and left me feeling even worse than I already did.

To give her credit, she did try to help me find out what was wrong. We went to multiple doctors and specialists, but the consensus was always the same: I’ve just got a weak stomach. It’s probably just stress.

I tried cutting out the last thing I ate before an attack came on, but it was never consistent. I didn’t know how to reduce my stress; I was a teenager — half the time I didn’t even know what I was stressed about. There was no rhyme or reason to any of it.

For a while, I thought it could be connected to my periods. So I tried the pill to see if it would help, but the attacks only increased in frequency, occurring once every two weeks instead of four.

It got harder when I started my first job at 15. Most people thought I was just “pulling a sickie”. I’d take on extra shifts the week afterwards to try and prove it wasn’t because I was being lazy. Thankfully, I worked with my best friend who had witnessed my attacks firsthand. She’d always try to cover my shifts.

By the time I was 19, I’d had enough. I dropped out of university with the intention of finally figuring out, once and for all, what was wrong with me.

The diagnosis

Autoimmune diseases affect around 5% of Australians. That’s over one million people. Heredity, genetics and various environmental triggers are thought to lead to them — and they’re considered a significant cause of chronic illness and death.

Some of the more well-known ones include myositis, lupus, rheumatoid arthritis and Crohn’s disease — but there are over 100 of them, which only makes diagnosis more difficult.

Each disease typically comes with a wide variety of symptoms, making it hard to identify a pattern. It also doesn’t help that the people suffering are often not taken seriously. We’re made to feel as though it’s all in our head, which leads us to putting off doctors’ appointments. What’s the point? It’s draining being told there’s nothing anyone can do.

This was certainly my case. When I made the decision to try again at 19, the first specialist I went to see did his best to find out what was wrong, going so far as to arrange an endoscopy. But in the end he came up empty-handed.

“It could be IBS,” he offered. He almost seemed as disappointed with the diagnosis as I did.

I was heartbroken.

A few days later, my dad called me. He had lived in Queensland since I was 14. He’d seen me ill before — I’d had an attack one morning when I was flying to visit him. I’d spent the flight staggering back and forth to the toilet to throw up, and once I landed I spent the rest of the day in bed.

But we’d never properly discussed it. He’d just assumed I had a bug. On the phone, though, he could tell something was bothering me. “Talk to me,” he insisted.

So I told him what was wrong. How I’d dropped out of uni to try and get a diagnosis. How I was tired of feeling sick all the time. How I was sick of the doctors telling me it was all in my head.

He was quiet for a long time, before he finally suggested I see his immunologist. “Maybe you’ve got what I’ve got,” he said. “I never honestly considered that I could pass it on, but it might be worth ruling out at least.”

I gave it a go, my expectations low.

We did the tests and when I went to get my results, the immunologist said, “I’m sorry Cassidy, but you tested positive for hereditary angioedema.”

You couldn’t wipe the smile from my face.

Finally. An answer.

Triggers & treatment

Autoimmune diseases are chronic. There are no cures, and the effectiveness of treatment is unpredictable. I was told by my dad’s immunologist — my immunologist as well now — that hereditary angioedema (HAE) has many triggers. Too much oestrogen was one, which was why the pill had made the attacks more frequent.

Another was trauma. For example, stubbing my toe could cause the area to swell (well beyond what would be considered normal). This was an interesting revelation, as I’d infrequently experienced swollen hands or feet and simply thought it was an allergic reaction or a bug bite. Turns out it was another way the HAE showed itself.

The biggest risk was if my face or throat swelled and blocked my airways — something I’d never even considered. Thankfully, to this day it’s not an attack I’ve ever experienced.

As for treatment, all I needed was one pill a day to keep the attacks at bay. I started taking them immediately, and my attacks almost completely disappeared. I went from once every four to six weeks, to once every three to four years. I could live with that.

I was filled with so much relief at how simple the solution was that I didn’t even consider the harm the medication could be causing.

Potential side-effects

Autoimmune diseases come with a range of symptoms — and sometimes, the medication used to treat it can also come with just as many unwanted side-effects. I viewed the medication I was given as a magic pill here to solve all my problems. And for a long time, it was.

My immunologist encouraged me to get regular liver scans and blood tests to ensure the medication wasn’t doing any damage to my organs. I did as he requested, but I didn’t think much of it. Thankfully, no serious damage came up in any of the tests.

But one thing happened that I never even considered a serious concern. At least, not until I was 25 and began to think about whether or not I wanted to have children one day.

I hadn’t had my period since I’d started taking the medication. Initially, it was a blessing. But eventually it became a big question mark over my reproductive health. At the same time, I’d also started dating my (now) husband and wanted to stop using condoms. But how could I be certain whether it was safe to do so?

My immunologist recommended I use birth control. He said it wasn’t good for a foetus if I were to fall pregnant on my medication. When the time came there’d be other — safer — methods of keeping attacks at bay. He advised against the pill, as the high dosage of oestrogen could cause an attack. So I chose Implanon, a progesterone-only contraceptive device in the shape of a rod that’s embedded into your arm.

It was a mistake. My period started — and it didn’t stop. And when I took the rod out only a few months later, the bleeding kept on coming. It was as if it was finally making up for lost time. A year later, and it still hadn’t completely stopped. My gynaecologist had me on a concoction of the mini pill (also progesterone-only) and a separate low-dosage oestrogen pill to control my bleeding. It was exhausting.

Finally, we tried the Mirena (IUD). Another progesterone-only medication, but as it was inserted directly into the uterus the dosage was significantly lower than the rod or the mini-pill. It was honestly the most excruciating pain going in, but thankfully it did the job. My periods stopped. I was back to “normal” — but I still had a large question mark hanging over my fertility.

I’ve since changed to a more natural medication that I inject subcutaneously twice a week. My periods have started again on a semi-regular cycle, even with the Mirena still in place. But I’m still uncertain what the future holds for my fertility.

Finding balance

Most of us understand that the immune system is a set of actions and reactions that can be triggered by a number of things, including invading germs, viruses or bacteria. But there are other triggers as well, some of them within your body — and most of them outside of your control.

One thing that puts you at risk for being attacked by your own immune system is your genetics. If your parents had an autoimmune disease, it’s likely that you may too — which is why I got HAE thanks to my dad. Some scientists also advise that it’s likely you may end up with different ones to your parents as well. Probably explains how my sister has ended up with polycystic ovarian syndrome (PCOS).

When a diagnosis is made, it often comes with a flood of emotions. Relief is a big one. But there can also be a sense of tremendous loss as well. Who are you now? What does this mean for the future?

My experience with HAE has been mild in comparison to some stories I’ve heard — and I know there are far more debilitating autoimmune diseases out there as well. But even still, it’s had an impact on my life and my career. I had to constantly prove to my boss and colleagues that I wasn’t faking it. I missed out on schoolies week at 17 because I had an attack the day before we were due to leave. In the first week of a new job, I had to leave work early due to an attack, explaining my disease and feeling as though I was confessing a dirty secret. Earlier this year, I switched to injecting myself twice a week because I was concerned about my fertility, and I’m still not any closer to knowing if babies will be possible.

Using Berinert SC to prevent attacks

The first time Steve witnessed one of my attacks, he was shocked at the intensity of it. He said he’d never witnessed someone vomiting quite so “violently”. But he still spent the entire night lying next to me, holding back my hair as I threw up into a bucket, dabbing a cool cloth against the back of my neck. It was the first time someone had truly taken care of me during an attack.

You’re not alone

Many people who have an autoimmune disease feel isolated by their illness. Friends and family aren’t as available or supportive as they were initially. This can sometimes be a result of conflicting needs: the person with the disease trying to find and accept who they are now — and the family and friends trying to hold onto who they were before.

Many end up with feelings of low self-esteem, sadness, depression — even guilt. I know I felt guilty for my mum and sister having to “put up” with me each time an attack came on. Questions such as “who will want me now?” may also arise, particularly in younger, single people.

But it’s important to remember you’re not alone. There are avenues of support available, including groups of people living with the same experiences as you. I joined a Facebook group called HAE Australasia and it helped tremendously. I was able to listen to and interact with other people who had similar thoughts, feelings and questions about our shared condition.

For those who have a family member, friend or loved one with an autoimmune disease, the best thing you can do is listen. Help them to anticipate and organise their thoughts, feelings and future needs — and give them the support they need to find themselves again.

Originally published on on November 22, 2020.

Bad at pronouncing words.

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