Coping With Burdensome Messaging

After more than two decades living with asthma, I am under the impression that many folks just don’t get it if they don’t live with the disease themselves. I have heard all kinds of whacky statements and advice from folks about asthma that seem to come from a fantasy world, such as recommending weight loss as a way to cure asthma (with the assumption that unhealthy lifestyles cause asthma). Nope.

While this is problematic in a number of ways, it is also not based in fact. It’s true that for some living with asthma, weight loss can help to alleviate some symptoms, but this is not a cure. Just like with many chronic conditions and diseases, asthma can be treated and managed, but there is no cure. If there was, many of us would be all lined up to get it!

Receiving unsolicited asthma advice

This kind of messaging can be detrimental. The one about weight loss is a lie I believed for much of my life growing up and really worked negatively on my self-esteem. Personally, I have gained and lost weight during different seasons in my life, and I had asthma the whole time.

On the one hand, I know it can be really difficult to imagine what it’s like to have your chest feel like it’s closing in on itself and as if you’re breathing through a fine straw if you’ve not experienced it. However, it sometimes feels as though well-meaning folks think asthma is somehow the fault of the sufferer and therefore can just be cured with a change in habits. This just isn’t true and minimizes the habits and management precautions many folks in the community do take to relieve symptoms and manage the disease.

My early understanding of asthma

Messaging stays with us for a long time. I remember going to the doctor when I was very little and hearing my mom discuss environmental factors that may have been triggering my attacks. For one, there were smokers in my life and so second-hand smoke was a big risk factor in triggering attacks.

It was also noted that maybe the place we were living wasn’t very suitable for me because of dust and bugs. That one stuck with me because I thought “Wait, you can catch asthma from bugs?!” I learned later that what the doctor meant was that there are allergens that can be produced in the home from all kinds of things, including dust mites, which can trigger an attack.

I still chuckle to myself now and again at how little minds work to paint a picture of what we hear, and for me, I pictured bugs passing on asthma to me. Even at an early age, I was introduced to the idea that there are so many factors outside of the individual that can trigger asthma attacks, despite best efforts to manage them.

A lot of these considerations are on my mind, as the world collectively navigates COVID-19. For folks in vulnerable health populations, it seems so important to really lean into the facts, because the fear and anxiety already present on the news and on social media aren’t helped by falsehoods about vulnerable health and what we can do about it. I wanted to share some of the affirmations I hold dear to stay rooted in reality and good mental health, when the messaging around can seem so bleak, ill-informed, and riddled with messages that aren’t true.

My own asthma advice

I am not defined by my disease

It can be particularly draining to receive so much messaging about being vulnerable to the pandemic because of an underlying disease all the time. For weeks, I was in full freak out mode as I was learning about COVID-19. I have begun to practice thinking about everything I am beyond asthma, because it is crucial for coping for me to get my head out of the news and fear.

Yes, I have asthma, but I am also a great cook I am realizing! I have baked so many delicious treats while sheltering in place, and by focusing on whipping up tasty snacks instead of ruminating over the fact that I am in a high-risk population, I have gained back so many hours from fear.

Asthma is NOT my fault

I have had asthma for as long as I can remember. My siblings all have it, too. And many of my family members and friends. Surely this stinking disease can’t be all of our faults, can it?

When thinking about the advice I’ve been given about how to ‘cure’ asthma, I always have to remind myself that little me, sitting in the hospital hooked up to a breathing machine, could not have caused it. I could barely form cohesive sentences when I remember having my first attacks, so I surely couldn’t have brought it on. It is even more important for me to remember this as an adult, because sometimes the messaging can get burdensome.

There are things I can control

Remembering things I do have control over helps me to cope with what I can not. I can control my level of activity and rest, I can control what I focus on, I can control my screen time, and I can control what I choose to do each day, for the most part.

Focusing on what I am in control of has been a much better use of my time than spiraling down the hole of feeling hopeless. It can be hard, but I try as much as possible. Even if I have to turn off my phone for an entire day, it is worth it to not be met with burdensome advice and news. I have even handwritten a few letters to loved ones when my phone is off, and despite the hand cramps, it was fun!

How do you cope with burdensome messages and unsolicited lifestyle advice about asthma, especially during the pandemic? Let's discuss in the comments!

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