When I was first diagnosed with COPD, I tried to hide how sick I was from my colleagues and managers. I worried that my company would make up a reason to fire me immediately if they found out that I had a chronic illness.
I was 60 and 5 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.
Hiding my COPD diagnosis
People usually sense when you’re hiding something, so it can be challenging to keep a chronic illness a secret.
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 a somewhat odd behavior. Yet I refused to disclose my illness.
I put my job first and my health second. I figured I could push through for another 5 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 had a negative effect on my well-being. It made it impossible to practice self-care.
I couldn’t attempt to stop or slow down for fear of being caught. This fear of being caught added anxiety to the already 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.
Deciding to open up
I finally opened up about my COPD diagnosis after about 8 years of hiding my increasing symptoms. The turning point was when I asked a colleague for help and she responded, “What’s wrong with your legs?”
I decided to share about my diagnosis so others could understand. Chronic illness is not shameful. It’s not a secret. Having an open dialog helps everyone to be clear about the issues at hand. My managers and colleagues even helped 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.
Here are my tips for talking to your employer if you feel you’re ready to disclose your condition.
Check in with your doctor
I had a frank talk with my pulmonary doctor and asked for his 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.
Get informed about your rights
I made myself familiar with my rights as an employee. This prepared me to talk to my employer so I could negotiate 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 for information, 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 or visit in person if possible. You may also want to talk to an employment lawyer to get your facts straightened out.
Keep a record
It’s hard to retain lots of new information, 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.
Make a list of reasonable accommodations
Mentally run through an entire day or week of work. Write down a list of what does and doesn’t work for your condition. Think about what kinds of adjustments might make sense for your situation.
Reasonable accommodations might include 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 that you can’t physically handle a full workweek. Ask to reduce your hours or request to work on a part-time basis if you’re financially able.
- Work from home. This wouldn’t have worked for me as a college instructor. But homeworking 1 or 2 days a week might be a good solution for you depending on your company and role.
- Buy or use materials to facilitate breathing. For me, this meant a microphone and speaker so that I didn’t have to strain 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 that was closer to the front door so I’d be less winded walking to work.
Approach your supervisor
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 accommodations entailed.
Be prepared to negotiate on some things. My employers refused the stool that I requested and provided me with a podium that 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 is not an easy request when you work in a busy downtown area. However, my boss asked for me, and I got it.
Talk to your closest colleagues
Next, I confided in my closest colleagues, and I let them know what was happening.
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.
Re-adjust as needed
My accommodations changed as my illness progressed. So I requested and was granted different measures to facilitate my workday.
Know when it’s time to go
After a year, I found the mere action of 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 paperwork you’ll need. You can apply online or at your local SSA branch.
Don’t be discouraged if you’re turned down, like I was. Continue to apply and appeal their 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 need to work. So I did just that.
Working from home gave me the freedom to better support the COPD community. I created my own peer-driven COPD community. I started a blog and now co-chair a provincial support group that meets once a month.
I also have weekly chats on my Facebook page. It didn’t take too long before I was recognized as an influencer and hired to write for other COPD communities. I also run a small bookkeeping business.
You can continue working if you have COPD. Make sure to remember that you have the right to certain accommodations.
It’s so important to open up to your boss and colleagues about your condition. It became instantly easier to manage my working days as soon as the proverbial cat was out of the bag.
You can do anything you want to do and still do it well! Just be sure to put your self-care first.
For more information on how to manage COPD, reach out to your doctor or healthcare team.
NPS-US-NP-00668 JUNE 2020