What it’s like to live with chronic illness in the era of natural cures.

 10 minute read

I’ve lived with chronic illness for the past eight years. My story a common one for women with chronic sickness. I was not taken seriously, I was misdiagnosed, and I was told I was just unlucky over and over again.

It started with a blood clot when I was 27. After a few events that could’ve possibly increased my chances for clot – recent injury, recent flight, and being on a birth control pill that was notorious for giving otherwise healthy young women blood clots, I had a massive DVT in my right leg.

The doctors said it was probably a combination of the three events but rest assured, I’ll be alright. Before they sent me on my way they said let’s test you for this rare condition just to be sure and lo and behold, I had it. An autoimmune condition called antiphospholipid syndrome. In other words, my blood clots dangerously quicker then it should.

I’m prescribed blood thinners for what looks like the rest of my life, and it’s OK because I don’t want to die.

The blood thinners I’m on have a bad rap. People tell me Warfarin is rat poison and imply I am poisoning my body by taking it. The drug has the best research there is; it’s well-studied and dependable. Taking this medicine makes sense to someone who does not want to die.

If constantly being concerned I am going to a) suffer another blood clot this time lethal or b) have a serious fall to which the blood thinners could cause me to hemorrhage wasn’t enough anxiety, those who provide their unsolicited opinion on my choice to take Warfarin send me over the edge. I learn to defend my pharmaceutical choices.

Two years later I had a sudden onset of pain under my rib, flu like symptoms, and difficulty breathing. Rushed to the ER they speculate it’s a blood clot in my lung, a tumour, or this super rare illness that it most likely is not. It is.

I’m hospitalized for over a week with cryptococcus. A fungal infection in my lungs. I’m an otherwise healthy 29 year old and I inhaled an airborne fungus and it grew to the size of a golf ball in my right lung.

The doctors were flummoxed at this infection. People with normal immune systems do not get infections like this. But I did. They chalk it up to me being unlucky.

The lack of a clear diagnosis, the mystery of it all, is only exasperated by the time I have a check up with my GP. She echos the dumb luck part and tells me that I need to calm down and meditate. She tells me I am high strung.

Because nobody knows why a fungus was able to grow in my lungs and my GP has convinced me that I am a fucking mess I begin to believe that I have done something to deserve this. Overworked. Stressed. Unworthy of healthiness.

The way the GP belittled the emotional pain I was in after experiencing snuffs my spirit. I’m so desperate for an answer that I choose the wellness pop culture answer: Stress made me sick.

With the most divine luck I have a successful pregnancy the year after cryptococcus and shortly after he’s born I have another DVT.

Doctors can’t figure out how I got a blood clot while on blood thinners so I take the blame because I am so desperate for an answer.  I decide to believe that stress gave me a blood clot and I seek out a reiki healer because that’s what you do when no one knows how to help you.

Seeking out a healer is not unique to me. The rise of the wellness industry which more or less is targeted to women has a winning marketing strategy. Women are fed up because sexism in medicine is real and we’re desperate to find a cure, any cure.  

I see a really good naturopath, too, who wouldn’t touch me with a ten foot pole. Meaning: She had no natural fix, no ancient cure. She said, stay on your drugs and drink more water. That was a $70 visit.

After the birth of my second child, things begin to get hairy. I notice abnormal bruising. A call to my hematologist (did I mention I have a hematologist on call?) and a few tests later she says, I’m going to test for one more thing. It’s super rare and I doubt you have it but let’s be certain. Foreshadowing at it’s finest.

This time I have a new diagnosis called Acquired Von Willebrand’s disease. This is the opposite of antiphospholipid syndrome – now my blood won’t clot (read: they are worried I will hemorrhage to death.)

First my blood clots too easily. Now it won’t clot easily enough. Where’s the hidden camera?

This is when others’ doubt of the whole medical system spikes. People speculate to my face that it’s the drugs that are making me sick. Another bozo wonders aloud if I should stop eating bread, maybe that’s why I have not one but two autoimmune conditions dangerously affecting my blood?

To say it’s difficult to hear speculation about what is making me sick is an understatement. Not only am I grappling with the fact that I am but 32 years old and managing another serious illness but I am now having people project their fears about my illness onto me.

People are afraid that gluten is killing us. People are afraid that big pharma is killing us. People say things like, autoimmune illnesses didn’t exist before so it must be the food we’re eating or it must be stress. Bottom line: people are afraid of a conspiracy.

I have learned to wear a shield.

Simply cruising facebook is like stepping into a field of landmines. I recall seeing a post on a popular health page that said, “the only doctor you’ll ever need is green juice.” Another one about why anti-inflammatories like Advil are actually toxic for your body and we should all avoid them and take turmeric instead. People drink this garbage up and then they reshare it.

The rampant resharing of misinformation that discredits science and reason on social media triggers me to my core.

Fast forward and over the course of a year I see a Rheumatologist, an Immunologist, an Infectious Disease Specialist, a thyroid specialist, and countless others. I have ultrasounds, CT scans, blood tests — you name it.

I get diagnosed with Lupus because “we have no idea what is causing all of this illness and Lupus is the only thing it could be so we’re going to call it Lupus, for now.”

Lupus is another triggering thing. Mostly women are diagnosed with Lupus. Most people go seven years and five specialists before getting a diagnosis. And there is no certain diagnosis unless they do a biopsy from an organ so it’s really a best guess kind of game.

The way that lupus is diagnosed invites the Natural Cure Representatives right to my doorstep. I recall one of the first times I shared that I have lupus with a newish friend and she breathlessly said, “you got to check out my friend’s website healing lupus.com, she cured herself.”

Let me guess, she found peace and cut out gluten and now she’s woke to the realities of big pharma? Or, did she channel the Medical Medium – the guy who thinks ghosts tell him how to cure illness – and celery juice cured her and now she’s fucking healthy as a horse?  

It takes everything in me not to knock this chic upside the head. First of all, you don’t even know me. Secondly, you don’t actually know anything about my specific illnesses. Third, fuck off.

The year that I get the lupus label I get another one that actually makes the most sense of all: immunodeficient. Seriously, fucking immunodeficient. Turns out this whole time, and I mean dating back to before the blood clots, I had a seriously depleted T-cell count which affects my ability to fight infection. And, it can trigger my body to create antibodies that attack my body and cause bleeding abnormalities.

I get every test under the sun and they even ship my blood off for genetic testing to Switzerland. The results confirm it’s not genetic and we’re back to a diagnosis of “environmental factors and a genetic predisposition.”

It’s still uncertain but it is the most certain uncertainty I have. I focus on what I know to be true which is this:

• Science has never been doubted more than it is doubted now (and it’s incredulous;) from people who actually believe the earth is flat to anti-vaxxers and climate change deniers. The common denominator is idiocy, not a government cover up.
• I have a team of doctors who are not only the best in their fields but they allow me to reach them by phone and email and call me to see if I’m doing OK;
• I am being treated and studied with a scientific, evidence based approach;
• The wellness industry is having a moment because half of the population are misdiagnosed, ignored, and fed up and desperate for answers

The wellness industry will continue to thrive. People will keep telling me I should try essential oils to heal myself. The spectators and science doubters will not shut up anytime soon. I will keep going and trusting the things I know to be true and science is one of them.  

If you know someone who manages chronic health issues here’s how you can help them:

1. You cannot help them
2. Empathy is not the same as sympathy.
3. Reading something on a wellness blog is not the same as science and unless someone is seeking out alternative medicine it’s not in your domain to recommend treatment
4. Pro tip: Think to yourself: Am I listening, or am I projecting my opinion?

Shout out to Providence Health Care and all the folks at St. Paul’s Immunology. I love you.

Photo Credit: Paulius Dragunas