Tips for people just diagnosed with Asthma
When you, your child, or another family member are diagnosed with asthma, there can be a lot of questions going through your head. You’ve probably learned that a lot of people have asthma—but the world can seem surprisingly void of people willing to share their real-life experiences living with this disease. Except when you manage to actually find them, sometimes they’ll have 17,319 different tips and it’s overwhelming. So, where do you start?
I was diagnosed with asthma 9 years ago, a little before I turned seventeen, at the end of April 2008. Here are the top 10 things I wish I’d either been told—or figured out myself—earlier on.
10. Learn it: What is asthma? As you go forward, you’ll learn the world doesn’t understand asthma all that well—from people you’ll encounter socially, to some medical professionals. Learn what asthma actually is—and isn’t (for example: asthma is not anxiety, or in your head! Yes, people still don’t realize that asthma is a LUNG disease…), just so you are ready to self-advocate if you need to.
9. Learn your triggers. Keeping notes on your asthma symptoms and rescue medication use, alongside what you do in a given day, can help you figure out triggers. However, realize that sometimes, you won’t be able to pinpoint your asthma symptoms to a certain thing. And, to make things more complicated, sometimes you might not respond to a trigger until way after you’re out of that environment. Or, things in your own body—like stress, or hormones related to a woman’s menstrual cycle—might trigger your asthma. Learn how to navigate these things with your doctor or other health professional.
8. Organize your medications. Figure out how to use the online or automated refill services at your pharmacy, mark on your meds when they are due to be refilled, and keep back-ups on hand. Keep extra rescue inhalers in places you are often (except not in your car so they don’t freeze or overheat.)
7. Learn about your medications and side-effects. You’d be surprised at how many people do not take their medications correctly, and then complain that they’re not working properly. Get your pharmacist or another medical professional to ensure you’re using your inhalers properly. Use a spacer whenever you can. And learn about the side effects your meds have and how to avoid them (if possible… it’s not always realistic to think you can avoid side-effects, but for example: rinsing your mouth out after taking inhaled steroids can prevent thrush, an oral yeast infection. Easy but important! Another friend has said she can avoid a lot of the shakiness associated with rescue medications by eating carbs… Your asthma/your body may vary.)
6. Get a written asthma action plan. Avoid guessing what to do when your symptoms get worse. Get your doctor or asthma educator to fill out a written plan to help you figure out what to do if you get sick or have a flare-up.
5. See an asthma educator! Certified Asthma Educators are medical professionals—respiratory therapists, nurses, pharmacists, or sometimes occupational or physical therapists, who have extra training and certification in asthma. Ask for a referral to an asthma education clinic to make sure you start off on the right foot.
4. You can get a second opinion. Or a third. The doctor who diagnosed you does not have to keep treating you. If your asthma still gives you trouble after trying an inhaler or two, insist you get referred to an asthma specialist. A pulmonologist will have the knowledge you need to get your asthma under control (or as in control as possible, depending on your severity). An allergist may also be helpful in figuring things out. Find a doctor that fits what you need them to. (I knew I’d found my fit when my asthma doctor referred to the slightly-antiquated spirometer in her office as “old-school”.)
3. Get—or stay—active. The last thing you might want to do after discovering you have asthma is actually engage in physical exercise. I won’t even try to tell you that it can be super fun (though it can), but not only can exercise help your lungs work more efficiently, it helps you to maintain a healthy body weight, which is super important in breathing easy. Being overweight makes it take more effort for your lungs to expand… making breathing feel harder, even without constricted airways
2. Find social support. 1 in 10 people have asthma. So, find them! Some of my best friends in the world I have met because of this disease, and while I hate asthma, I love most of the people I’ve met because of it. And, 80% of the time we won’t even talk about asthma… but in that other 20%, we probably spend 10% of the time actually seriously discussing asthma, and the other 10% either making fun of asthma/ourselves/the medical system.
1. Relax. Yeah, you have an incurable lung disease. But so do millions of other people. You can still do anything you want to (well, they still have that thing where they won’t let us go scuba diving… Allegedly.), because you own your life: asthma doesn’t. If this part is too hard for too long, seeking help from a mental health professional may help you to work through that adjustment to life with asthma. But as much as you can, relax! Coexist with asthma, but don’t let it change your life—own it.
Your priority on these things I’ve learned may very well be different from mine—but keep them in mind as you begin your asthma journey. And, if you’re overwhelmed, take a step back and re-evaluate: there are people around to help you, so use them!