I have asthma.

When you learn this about me, what assumptions do you make? That I am fragile? Weak? That my parents and doctors failed me somehow? That I don’t (or didn’t) take good care of myself? That I can’t (or won’t) do the things healthy people do? That it can’t really be that bad, and I’m just a needy attention-seeker?

Stigma, in my experience, is all about assumptions applied in a negative way. The result of stigma ranges from mild discomfort and passive avoidance to severe judgement and active opposition or oppression. No matter where it falls on this spectrum, stigma discourages conversation and encourages further assumptions.

The Canadian Lung Association released its Stigma Report (2018) this month. I was privileged to be part of a small group of people chosen to contribute to this project  by  representing and advocating for Canadians who have lung disease. During this process, I was a little ashamed to learn that I’m as guilty as anyone of making assumptions that cast those with lung disease in a negative light. More surprising is that the primary target in my cross hairs has been… me. 

In this first of a series of #breakstigma posts about stigma and lung disease, I will unpack three assumptions about my own asthma that have contributed to stigma against myself. In naming them, I seek a path to overcoming them and living more peacefully with my circumstances.

Assumption #1: “It’s not that bad.”

In the survey the Lung Association conducted (and in which, by the way, I did not participate), over half of respondents who had asthma said it had been directly or indirectly suggested to them that asthma is not a serious disease. Furthermore, nearly one-quarter of (non-asthmatic) respondents reported hearing that asthma can be overcome with a good attitude. As an asthmatic, I confess to buying in to both those ideas.

The hard truth is that asthma is still so poorly understood that it misses diagnosis all too often. The symptoms of my disease have been so elusive in my 33 years of living with it that it was only just in the last few years that any doctor even used the word “asthma” to describe it. Growing up, I heard lots of talk about allergy and wheezing, but not asthma. It was never “that bad.”

I am living proof that if you don’t take asthma seriously, it can come back to bite you, hard. The result of decades of living in denial is that while most of my allergies seem to have disappeared, I now have moderate obstructive lung disease. In everyday language, this means I have half the airflow I should at my age. Worse, the go-to rescue medication for asthmatics (Ventolin) no longer works on my airways. Some doctors are incredulous when I tell them this. I have learned to take my lung function test results with me to the office as proof.

In reality, asthma is a serious lung disease − regardless of the type, severity and triggers of one’s asthma.

Canadian Lung Association, Stigma Report (2018)

Assumption #2: “Asthma is preventable if you avoid your triggers.”

I didn’t see this particular assertion come up in the survey report, but the idea of stigma against a so-called “self-inflicted” disease played rather prominently. I’ll deal with the idea of “getting what we deserve” in another post. In the meantime, I will say that, as someone affected by mental illness and thoughts of self-harm, I find the whole idea of “self-inflicted” to be unnecessarily harsh and rather unhelpful when it comes to lung disease. However, I see the point, because the truth is our actions have consequences, intended or not. But no one starts smoking with the intent of harming themselves, do they? Maybe they do, but that seems extraordinarily… inefficient. I’ve never smoked, and I’m rabidly against it, but I understand why people do it (which is largely why I’m so rabidly against it). I don’t think smokers should have to pay for their health care – I think Big Tobacco should. But I digress…

More than 1 in 15 (7%) [of Canadians surveyed] believe that all lung diseases are self-inflicted. In fact, lung diseases can affect anyone. Some have genetic predisposition, while in other cases it is behavioural or environmental factors that cause a lung disease.

Canadian Lung Association, Stigma Report (2018)

Can asthma be construed as a self-inflicted disease? I certainly have thought so. But here are some things I learned along the way:

Triggers aren’t actually that easy to avoid.

I love animals, especially ones with lots of fur, and I spent most of my childhood surrounded by cats, dogs, horses, and hamsters, sneezing all the while. I suffered pretty severe heartbreak in my teens when I had to give up riding horses because being on the farm made me wheeze.

Then, in my twenties, I landed in medical research as a graduate student and was assigned a project that involved working with mice and rats. I would emerge from the animal house gasping and sneezing and wheezing and thinking I had no choice but to persevere.

In my thirties, I left most of the allergens in my life far enough behind to fall under the radar of a proper diagnosis. This wasn’t asthma, because no one had told me it was, and my own prejudice didn’t want to admit to such weakness (see Assumption #1). Besides, I wasn’t using Ventolin at all anymore – in fact, I was “cured”! Fit, fast and fabulous, my resting heart rate was 60 beats per minute and my FEV1 was 100%.

Avoiding triggers is not a cure.

One day in my early forties I was singing in a folk circle, and suddenly it felt as though my lungs were filled with concrete. It took me totally by surprise, as none of my normal “triggers” were involved. This feeling of oppression in my chest built over several months until I became really quite alarmed. Back to doctor, where I navigated my way through two respiratory specialists and an allergist. I ended up on not less than six different medications, both inhaled and oral, with no real improvement.

The silver lining was that I finally got a full pulmonary function test which gave me the diagnosis of “moderate obstructive lung disease”, and a doctor finally said to me “I think this is asthma, but it’s a weird asthma.” Weird, apparently, because the allergy that started it all seems to have disappeared.

Things pile up.

The word “intersectionality” appears to be a hotly debated term in psychosocial circles, but it resonates with me. Intersectionality describes the interaction of multiple circumstances and/or social vulnerabilities in an individual or group with resulting effects (usually in the form of discrimination or disadvantage) where the whole is greater than the sum of the parts. For me, the intersection lies between asthma, a herniated disc in my lumbar spine, and chronic depression and anxiety.

My “fit, fast and fabulous” days were brought up short by acute and severe back pain in 2013 that left me in a wheelchair for several months. The pain left me immobilized and depressed, and I ate and drank to salve my wounded soul, losing my physical fitness and lean body.

Never having recovered the level of fitness I had, it has always haunted me to wonder that if I had not lost my active lifestyle, would I have avoided the “weird asthma” I have now? More than that, if I wasn’t already fighting the heavy dragon-breath of despair and hopelessness, would I have had the energy to get active again? Bottom line: is there anything I could have done to prevent my current circumstances?

And here’s where I get to with that: what on earth does it matter now? I’m here, aren’t I? Larger, heavier, with a resting heart rate well over 70, and an FEV1 of 50%, no amount of wishing, regret, or self-abuse will bring back the supposed “glory days”.

What you can do to help reduce stigma: Look to the present, not the past.

Canadian Lung Association, Stigma Report (2018)

Get moving, you lazy butt, and shed those pounds! Having railed on myself in this manner, this leads perfectly to my third assumption.

Assumption #3: “Asthmatics are inactive by choice.”

Sixteen percent of non-asthmatic respondents to the survey indicate they believe that asthmatics are “inactive by choice.” Presumably this means people think we can be active, we just choose not to be. The inference is that we are lazy.

I believe with the essence of my being that moving is better than not moving. There is no end of medical evidence for this, and yet couch-potato-hood is still an epidemic for us in Canada, with dire consequences to our health and health care system. I refuse to believe that sitting still is a good option for anyone, even an asthmatic. 

But, exercise as a trigger for asthma is real. I even had a doctor say, “I’m never going to tell you not to exercise, but watch your triggers.” I thought, so what I am supposed to do? Give up? If I did that, I would die from despair (and I mean that literally). 

Don’t assume … that those with asthma cannot do certain things, [just] because of [your] perceived notions of what might trigger them.

Canadian Lung Association, Stigma Report (2018)

So, what are my choices? I may not be able to run, but I can walk. I may not be able to haul two big speakers at once, but I can carry one at a time. I may have had to adjust my breath control, but I can still sing. I may get tired faster, but I can rest and then keep going. I am not “inactive by choice,” I am active within the parameters of my disease. And I will push through the discomfort and keep going.

Moving forward: Do what you can, and life is good.

A friend of mine from high school died when he was in his mid-thirties of bone cancer that spread to his lungs. He lost his lower leg in his twenties, but he played hockey and lived life to the fullest right up to the end. My memory of him is defined by his focus on the present and the good. At his memorial, there was a video of an interview with him, where he basically said you have two choices: you can focus on what you can do or focus on what you can’t. When you focus on what you can do, then life is good.

With a heart full of gratitude for Mike, I choose to focus on what I can do. I can walk my dog. I can ride a horse. I can clean my house. I can sing. I can paddle a canoe, swim in the lake, and hike in the woods. I may not be able to go as far or as fast as I used to, or think I ought to, but within my limitations, I do what I can. And, life is good.

I have asthma. This affects my life, but it does not have to define it. Knowing now how I have stigmatized even myself, I can do my own work to #breakstigma. 

Note: the views expressed here are my own. For more information about the Canadian Lung Association, visit https://www.lung.ca.