I Hid My COPD at Work. Here’s Why I Finally Opened Up

Some people with chronic obstructive pulmonary disease (COPD) may worry about facing discrimination in the workplace.
Barbara Moore hid her COPD from her work for eight years until her health threatened to fail completely with all the added stress. Sharing her diagnosis with her managers and colleagues finally allowed her to cultivate a more supportive and understanding work environment.

Today, Barbara shares eight tips for disclosing and managing COPD at work and why opening up was vital for her self-care.

When I was first diagnosed with COPD, I tried to hide how sick I was from my colleagues and managers. I worried my company would discriminate against me, making up a reason to fire me if they found out I had a chronic illness.

I was 60 and five years from retirement. I needed my job more than ever for healthcare, life insurance, and my income. I now wish I had opened up sooner and prioritized my own self-care.

I worried about stigma from my managers and colleagues

People usually sense when you’re hiding something, so keeping a chronic illness a secret can be challenging.

COPD makes it difficult to keep up with the crowd. Walking even short distances may be impossible, so forget about walking and talking at the same time.

I was a college instructor, so getting into a seated position to converse with my students seemed like odd behavior. Yet I refused to disclose my illness in fear of stigma, insensitive comments about COPD in general, and exposing my vulnerability. 

I put my job first and my health second. I figured I could push through for another five years, but I didn’t really understand how sick I was and that the more I pushed through, the sicker I’d get.

Hiding my COPD hurt my well-being. It made it impossible to practice self-care at work, the stress of which spilled into my home life.

I couldn’t attempt to stop or slow down for fear of being caught. This fear of being caught added anxiety to the heavy weight of COPD.

My inability to share also made it hard for others to help me. It created an atmosphere of alienation.

I pushed so hard that my heart began to fail. I couldn’t push anymore.

Opening up proved to be a turning point

After about eight years of hiding my increasing symptoms, I finally opened up about my COPD diagnosis. The turning point was when I asked a colleague for help, and she responded, “What’s wrong with your legs?”

I finally decided to share my diagnosis so others could understand. Chronic illness is not shameful. It’s not a secret. Having an open dialog helps everyone recognize the issues at hand. My bosses and colleagues even helped me with ways to manage once they knew what was happening.

Your life changes after you’re diagnosed with a chronic illness. Denying this fact could mean you’re denying your own health.

8 tips for disclosing and managing COPD at work

Here are my tips for talking to your employer if you’re ready to disclose your condition.

1. Check-in with your doctor

I had a frank talk with the pulmonary doctor and asked for advice on how to proceed.

He was very good at explaining the mandatory aids I would require, such as a walker and supplemental oxygen. Your doctor should also be able to help you understand your rights in the workplace or point you to someone who can help.

Ask your doctor to put their recommendations in writing. You’ll likely need it later when you talk to your employer.

2. Get informed about your rights as an employee

I made myself familiar with my rights as an employee. This prepared me to talk to my employer about negotiating an arrangement that suited my needs.

The Americans with Disabilities Act (ADA) requires U.S. employers to make reasonable accommodations for chronically ill employees. This includes assistance or changes to your role to enable you to do your job despite any constraints linked to your health condition. 

Your employer also can’t fire you or deny a promotion if your condition limits you from performing specific tasks.

You qualify for the ADA if you experience symptoms like trouble breathing that substantially limit your ability to do your job.

It’s tempting to rely on your friends, family, or Human Resources to help find the information you need, but it’s important to do the research yourself. Inform yourself so you’re prepared to talk to your employer.

Get in touch with your local government authorities to get the information from the source. The ADA has a national network with 10 regional centers in the United States. Call the center that serves your state.

Be ready with a list of questions, including best- and worst-case scenarios. Ask if they can send brochures with information about your rights. Even better, visit in person (if you can). You should also talk to an employment lawyer to get your facts straightened out.

3. Keep a record of what’s discussed with HR, managers, and healthcare providers 

It’s hard to retain lots of new information about workplace accommodations and your rights as an employee, especially if you’re talking on the phone.

Write down as much as you can. Get a journal and keep notes in chronological order. You may need to refer to these notes in the future.

4. Make a list of workplace accommodations for your employer

Mentally run through an entire day or week of work. What kinds of adjustments make sense for your situation?

Reasonable accommodations could include workplace approval to:

Use a motorized wheelchair. Discuss any new equipment you may need to maneuver at work to manage your condition.

Cut back on your hours. COPD symptoms may become so taxing you can’t physically handle a full workweek. Ask to reduce your hours or request to go part-time if you’re financially able.

Work from home. This wouldn’t have been possible for me as a college instructor. But working from home one or two days a week might be a good solution for you, depending on your company and role.

Buy or use materials to facilitate breathing. I requested a microphone and speaker to prevent straining my voice. I usually had big classes and had a hard time making myself heard at the back of the room.

Sit as needed. Talking on your feet uses a lot of energy. I asked for a tall stool so I could sit while I was lecturing my students. 

Obtain a closer parking spot. I asked for a parking spot closer to the front door so I’d be less winded walking to work.

5. Approach your supervisor to discuss the support you need

I approached my immediate supervisor once I felt well-informed on what to do and how to do it. I explained my situation and asked her for advice on how to proceed. She asked my doctor to put my needs in writing.

We next discussed what my reasonable workplace accommodations entailed.

Be prepared to negotiate on some things. My employers refused the stool I requested and provided me with a podium I could lean against instead. It wasn’t as good as a stool, but it did the trick, and I was willing to compromise.

But don’t hesitate to ask for something, even if you think you might not get it. A parking spot isn't guaranteed when you work in a busy downtown area. However, my boss asked on my behalf, and I got it.

6. Talk to your closest colleagues

Next, I confided in my closest colleagues and let them know what was happening with my health. 

My informed colleagues stepped up to help save me steps where they could. They offered to do the heavy lifting, deliver photocopies, and bring me lunch. Their support was wonderful and would never have happened if I’d kept my COPD diagnosis to myself and continued struggling alone. 

7. Ask for adjustments if/when your condition changes  

My accommodations changed as my COPD progressed. As I noticed more changes in my condition, I adjusted my requests accordingly until I retired. Most of the time, these requests were granted, or I was offered a compromise, such as with the stool. 

8. Accept when it’s time to retire

After a year, I found getting to and from work more tiring than I could handle. It was necessary to pull the plug and call it quits.

You may qualify for disability benefits through the Social Security Administration (SSA) if COPD prevents you from doing your job. Talk to your doctor to ask if they can prepare the necessary paperwork. You can apply online or at your local SSA branch.

Don’t be discouraged if you’re turned down, as I was. Continue to apply and appeal the decision.

I was devastated when the doctors told me it was time to retire. My social worker and I put a great deal of thought into how I could re-invent myself after I left my job. I still had a strong desire to keep working and stay busy. So I did just that.

Working from home gave me the freedom to better support the COPD community. I started a blog and now co-chair a monthly provincial COPD support group. 

I also have weekly chats on my Facebook page. It didn’t take long before I was recognized as an influencer and hired to write for other COPD communities. I also run a small bookkeeping business to keep my mind (even more) active.

The information presented is solely for educational purposes, not as specific advice for the evaluation, management, or treatment of any condition.

The individual(s) who have written and created the content in and whose images appear in this article have been paid by Teva Pharmaceuticals for their contributions. This content represents the opinions of the contributor and does not necessarily reflect those of Teva Pharmaceuticals. Similarly, Teva Pharmaceuticals does not review, control, influence or endorse any content related to the contributor's websites or social media networks. This content is intended for informational and educational purposes and should not be considered medical advice or recommendations. Consult a qualified medical professional for diagnosis and before beginning or changing any treatment regimen. 

NPS-ALL-NP-00988 MAY 2023