What I Wish Others Knew About Life With COPD

People see me out and about and think I look fine. What they don't see is everything it takes just to get my day started. Living with COPD is a full-time job, and most of that work happens behind the scenes.

The hidden struggles of COPD start before my day does

My day does not start when my feet hit the floor. It starts with breathing.

The first thing I have to do every morning, before anything else, is a breathing treatment. While I do that treatment, I wear a vibrating vest. This vest is called a high-frequency chest wall oscillation vest. It wraps around my chest and vibrates quickly to shake loose the extra mucus that builds up in my lungs. It helps me cough it up so I can breathe easier.

I have to do this twice a day, every day. No days off. After that, I take my daily maintenance inhaler. This inhaler is not a rescue inhaler. It is what helps me get through the day. Without it, I get short of breath just walking across the room.

That is all before I have even brushed my teeth.

Getting ready takes energy people don't see

Getting ready for the day used to be simple. That has changed completely.

Gone are the days of a quick shower every morning and getting fully dressed without thinking about it. Now, a shower can wipe me out. The steam, the heat, the standing, the reaching – it all takes my breath away. I have to stop, catch my breath, and then start again.

Because of that, I only take full showers twice a week now. On the other days, I wash up at the sink because I just don't have the energy.

Getting dressed is the same way. Do I put on real clothes today or another pair of comfy pajamas? That is a real question I have to ask myself. It depends on how much energy I have left.

If I have an appointment or I am going out, I have to get up at least 2 hours before I need to leave. It used to take me 10 minutes to shower and run out the door. Now it takes two hours with many breaks built in. That is just my new normal.

Leaving the house with COPD takes constant planning

If I am going anywhere, I never just grab my keys and go. I have to bring my COPD To-Go Bag. You can read more about what I pack here.

This is a bag I take everywhere. You never know what you are going to need when you have COPD. I also have to bring my portable oxygen concentrator, or POC, and all the batteries I will need while I am gone. I have to think about how long I will be gone, how many batteries that means, what the weather will be like, and whether I need someone to come with me.

I have said this before, but packing for an outing is a lot like packing for a newborn baby. Remember packing that diaper bag for the first time? You try to think of everything you might need, just in case. That is exactly how it feels every single time I leave the house. What will I need? What if I need more? Am I overpacking or underpacking?

It is constant planning.

Living with COPD without oxygen can be even more invisible

Some of us wear oxygen all the time. You can see the cannula; you can hear the machine. People know we have a breathing problem.

But many more people with COPD do not wear oxygen. You cannot see their struggle. And in some ways, their struggle is even harder.

When you don't wear oxygen, people can't see that you are short of breath. They can't see your lungs working hard. They can't see the panic that comes when you can't get a good breath.

Because it is invisible, people expect more from you. They expect you to move faster, to keep up, to not need breaks. They don't understand why you are tired or why you had to cancel plans.

Whether we wear oxygen or not, we are all fighting for the same thing - air.

What I wish you knew about COPD as an invisible illness

I wish people knew that just because you cannot see it does not mean it is not there. You cannot see me struggling to catch my breath after getting dressed. You cannot see the breathing treatments I did before you saw me. You cannot see how tired I am. You cannot see the day I took to recover from an outing the day before.

I am still me. I still want to go places, see people, and live my life. It just takes me longer, and it takes more planning. A little patience, a chair to sit in, and understanding when I need to take a break - well, it means more to me than you will ever know.

So before I even head out the door, I have already done a full day's work. If I made it there, it is because I really wanted to be there.