The Newly Diagnosed Mental Health Toolkit

When I was first diagnosed with COPD sixteen years ago, I felt lost. I think most people feel that way when they hear the diagnosis. There is no manual. No one tells you how you are supposed to feel or how you are supposed to get through it.

I had to learn everything through trial and error, along with the help of family, friends, and other people living with COPD. One thing I didn’t expect was the depression that came with it. I’m not sure if everyone goes through it, but I believe many people do.

I clearly remember my first thoughts after being told I had Alpha-1, a genetic form of COPD. I didn’t know how to react. Should I cry? Should I be angry? I just didn’t know what to feel.

Looking back, there were several things that helped me get through that difficult time.

Finding strength in my support system

The first step for me was telling my family and friends about my diagnosis. I knew that if I was going to get through this, I couldn’t do it alone. They needed to understand what I was facing so they could support me.

With my family, I shared everything. I explained what COPD and Alpha-1 meant, including the fact that it was genetic. That made it harder, knowing it could affect them too. We talked through everything together. Their support helped me more than I realized at the time. In fact, I didn’t even know I was depressed until much later.

I did the same with my friends. I told them what my future might look like and what I might go through. I wanted them to understand, even if they couldn’t fully relate. Just knowing they were there for me made a big difference. I wasn’t alone anymore.

In the beginning, I had a lot of good days and bad days. There were times I felt overwhelmed. I remember thinking that if I heard the words “COPD” or “Alpha-1” one more time, I might scream.

Finding control through knowledge and self-care

But something started to change over time. The more I learned about COPD, the better I felt. It may sound strange, but learning gave me a sense of control. I began to understand what was happening in my body. I learned how to talk to my doctors and ask the right questions.

I also learned how important it was to take care of myself. Eating a healthy diet and exercising helped me feel better physically and improved my mental health. I started to focus less on what the future might bring and more on the present moment. I learned to enjoy life one day at a time.

Overcoming isolation

There was a time when I stayed home a lot because I felt like a burden to my family. But staying home only made my depression worse. I realized I needed to make a change.

I started going out more and doing the things I still could do. I might have been slower, and it took more effort, but it was worth it. I loved being able to attend my kids’ school events, hobbies, and sports. Later on, I got to enjoy those same moments with my grandkids. Those experiences brought me joy and helped lift my mood.

Another big turning point for me was joining online COPD and Alpha-1 support groups. At first, I joined to learn. But over time, something even more meaningful happened—I began helping others. I supported people who were newly diagnosed, just like others had once helped me. That gave me a sense of purpose.

I even helped start an in-person support group in my area. Being part of a community made a huge difference in my life.

Normalizing therapy and giving yourself grace

During COVID, I went through another period of grief and sadness. That’s when I tried online therapy. I wasn’t sure I needed it, but my insurance offered it, so I thought, “Why not?” I’m so glad I did. Those sessions helped me more than I expected. Sometimes we don’t realize we need help until we receive it.

Over time, without even noticing it, my depression began to lift. I still have tough days. Sometimes I have what I call a “pity party.” But I’ve learned to let myself feel those emotions, then move forward. Some days those feelings last only a short time. Other days, they might last a couple of days. But I don’t let them take over. I give myself grace, and my family and friends do the same.

If there are two things I wish doctors would “prescribe” along with medication when someone is first diagnosed, it would be mental health support and pulmonary rehabilitation. Both are so important, not just for the body, but for the mind as well.

Your newly diagnosed COPD mental health toolkit

If I could create a mental health toolkit for someone newly diagnosed, it would include this:

• Lean on your family and friends.
• Learn as much as you can
• Take care of your body with healthy food and exercise
• Focus on the present moment
• Stay active and do the things you enjoy
• Connect with others who understand
• Help others when you can
• And don’t be afraid to seek mental health support

You are not alone, and you can get through this—one step at a time.