CF at work: Talking to employers about cystic fibrosis
This is part of a series about living with invisible illness for Cystic Fibrosis Awareness Month. Go here to read more.
Disclosing an invisible illness like cystic fibrosis (CF) at your workplace can feel like a gamble. But some gambles are forced, like if you need to be hospitalized or a sickness tampers with your performance.
I’ve had several workplaces over the years and although I’ve not always been treated fairly from the start, in every job I eventually managed to create a healthy working relationship with my employers regarding my CF needs. Following are some lessons I learned along the way.
Know your rights
Ideally, you won’t need to leverage the law to protect your job, but whether that becomes necessary or not, knowing your rights can validate any requests for accommodations or protections.
To stay up to date about current laws in the United States protecting you in the workplace, visit:
If you’re not feeling optimistic about your situation, you might consult a disability rights attorney about disclosing your condition.
If you belong to a union, a union representative could provide guidance specific to your job, and perhaps even attend the meeting with you.
Prep for a productive chat
It helps to know the “why” of disclosing your disease. Your employer may be more receptive if you have a list of desired accommodations rather than expecting them to come up with ideas. Write down those ideas and ponder what compromises you are and are not willing to make. Be prepared to negotiate.
Here are some examples of accommodations you might request:
- remote work when hospitalized
- flexible hours or sick days for medical appointments, illnesses, or hospitalizations
- frequent breaks to address fatigue
- a private working space when you have a bad cough
- a private area to administer IVs and take other medications.
Also consider supplementing these requests with a note from your doctor that outlines any needs and recommendations.
Managing the discussion
Schedule a meeting with your manager, someone from human resources, or both, to discuss your situation. It could be wise to have this conversation proactively, before any needs are made urgent, so you don’t have added pressure in the midst of a crisis.
Rehearse the conversation with a friend or family member ahead of time, especially if anyone in your circles works in a management, HR, or administrative role.
It’s normal for accommodations to feel fine in theory but not work on a practical level. Because of this, you may wish to request a check-in date to assess if the accommodations are working for you.
Processing the discussion
After your meeting, write down a summary of what was discussed and send it in an email to your employer to document what took place. Include what was agreed upon, any next steps, and any relevant dates.
Ensure the email is responded to in order to confirm documentation. Follow up if you don’t hear back.
Although retaliation for requesting disability accommodations is illegal, it does happen, so document in detail all discussions, including texts and emails.
My hope for you is that your employer receives your revelation with compassion for the difficulty of your position. Those mutations in your genes aren’t your fault, and if you follow all the strategies in this guide, a resistant employer isn’t your fault either.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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