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By: Chelsea Goldstein, Dysautonomia Information Network

IMG_ComingOut.jpg.cf1ff29347c5085f6f59f1f4a4c40d99.jpgIf you have ever worked while living with a hidden chronic illness, you have probably struggled over whether or not to share your illness with your boss and coworkers. You've likely asked yourself questions such as: Should I tell my boss about my illness? Should I tell my coworkers? When should I tell them? Will I be treated differently once they know? 

These are big questions, and there is not one, correct way to answer them. The choice to disclose your health condition(s) at work is a personal one, and only you can decide the right course of action given your needs, your work environment, and your professional relationships (1). Nonetheless, there are some important things you should think about to make the best decision for yourself. The rest of this article will discuss the timing of disclosure, some fears you may have about disclosing, and tips for having the discussion.

The Timing of Disclosing Your Condition(s) at Work

If you are considering sharing your health condition(s) with your boss and coworkers, an important factor to think about is when you will share this information with them. There are pros and cons to disclosing your condition before you hired, right after you are hired, or once you have worked in your position for some time.

Before You are Hired

Pro: Disclosing your condition(s) before you are hired ensures there are clear expectations and understanding on all sides. This can help you establish needed accommodations from the beginning, and limit worry about being able to perform specific job duties. For example, if a job has strict, frequent deadlines and your symptoms flare unexpectedly, then an honest discussion about adaptions could prevent issues later on (1).

Con: Many people with invisible conditions worry that they may not get the job if they disclose their illness in the interview (1). While it is illegal for employers to discriminate based on disability, some people have reported that they were refused jobs on false pretenses. Others have said that sharing their illness during the interview was a way to weed out the employers the wouldn't want to work with, anyway. It is an unfair and difficult situation.

Right After You are Hired

Pro: Some people find that disclosing their health condition(s) before they impact their job performance is ideal. This prevents discrimination during the hiring process, but it also promotes understanding if your health impacts your job later on or creates any safety concerns (1). You may want to allow yourself time to adjust to the job before you disclose, so you have a better idea of what accommodations you may need, and a stronger understanding of how your boss and coworkers may react.

Con: Some people fear that their boss will feel "tricked" if they disclose their condition(s) early on in a position, and may even fear that their boss will treat them poorly in retaliation. If you get to know your boss a little bit before you disclose, you will have a better idea of how they may react. If your boss does react poorly, remember that it is your right to withhold your health information during an interview.

When Your Health Interferes

Pro: You can be in a tricky situation if you have not disclosed your condition(s) at work, but your health starts to interfere with your job. Even if you have fear about sharing your illness, many people feel relief once they disclose because they do not have to keep jumping through hoops to perform their job duties. In fact, many bosses are also relieved to learn there is a reasonable explanation for changes in job performance, and it's not due to a lack of engagement or worse (3).

Con: You may be making your job more difficult, and your health worse, by trying to hide your illness at work until it becomes an issue. Some people also fear that their employer may be angry that they did not disclose their illness earlier. If this is the case, you may be less protected, legally, if you withheld your condition from your employer for some time (1).

Addressing Your Fears About Disclosure

It's normal to fear sharing your illness at work.

1. Will my illness be used as a scapegoat at work? Some people fear that once their bosses and coworkers know about their illness, they may feel like they are under a microscope at work. Will people blame any small slip or performance issue on my condition(s)? While this could happen, it is more likely that your boss will not treat you much different, and they may even be relieved to have an explanation for some changes in performance (1).

2. Will my coworkers just think I am trying to get special treatment? This is another common fear, especially when your accommodations may include coveted job perks like working from home part-time or a private office to manage your symptoms. However, many people report that employers usually try to be accommodating and coworkers are often understanding (1). You may even be surprised to find that some of your coworkers are also living with invisible conditions, or have a loved one with a chronic condition, and may have understanding for your situation. Also remember that you are not required to disclose your illness to coworkers if you believe it would be better to keep that information between you and your boss, only.

3. Will people judge me or treat me differently once they know about my condition, especially if they don't understand it? Unfortunately, many of us with poorly understood conditions, such as dysautonomia, or stigmatized conditions, such as anxiety, have experienced unfair reactions, like people telling us we are being dramatic, and viewing us as less-than-human. Because of these experiences, you may fear that your boss and coworkers will treat you poorly once they learn about your condition. Some people even fear being labeled unfit for their jobs and fired, despite ADA protections (1).

As mentioned before, many bosses will find this news a relief if your recent job performance has been slacking. Learning that you have a health condition that they can accommodate may be much better than what their imagination has conjured (3). While you are not obligated to be the educator for your illness, it can also be helpful to share information about your condition(s) with your coworkers and boss (1). You could share pamphlets from DINET.org, or offer to answer questions about your condition at an upcoming meeting. Finally, remember that people will likely treat your condition(s) the same way you do, so try to remember that you are a strong and complete person who has been made stronger by your experiences with illness. If you convey this energy, people will probably send it back to you (1).

Tips to Disclose your Condition(s) at Work

So you've made the decision to disclose your health condition(s) to your boss. It is a tough choice, and you should be proud of yourself. You may, however, still have some anxiety about how to approach this discussion. These tips may help.

Decide who you will talk to. Who are you planning to disclose your illness to? Some people suggest reviewing the employee handbook and reporting your condition in accordance with the policy on disclosure. Oftentimes, this may mean talking with Human Resources first. The benefit of discussing your condition with Human Resources is that they can be knowledgeable and experienced in this area, especially in larger corporations (1). Others say that you should start with your direct supervisor, especially if your condition has, or will, impact your interactions with them. If you aren't comfortable talking to your supervisor or HR just yet, consider talking with a trusted coworker to get feedback (2). The right course of action may depend on the culture of your work environment. Is it a formal corporate setting with clear policies? Do you work in a smaller organization with fluid channels of communication? How is your relationship with your supervisor? Just remember that your employer is only allowed to share your health information with others to make necessary accommodations (1).

Know your job well. Once you decide who you will share your illness with, you need to think about what you will say to them. Often, conversations about tough subjects can be the most successful if you prepare and put some thought into potential solutions. One strategy is to closely review your job description and identify the specific tasks that are challenging. Make sure you can explain exactly why they are difficult for you with your health condition, and come up with a reasonable accommodation for the task before the conversation with your boss (4). Employers tend to appreciate solutions-oriented people, and taking the initiative to think of accommodations demonstrates you are team player (2). You could also use your job description as a tool to facilitate a conversation with your employer about essential job functions versus menial job functions (4). Are any of your menial job functions causing a lot of difficulty? Are these tasks that could be dropped or exchanged with another coworker? 

Keep it professional. Living and working with an invisible illness has, no doubt, been an emotional experience for you. I know that I have come home many evenings from various jobs, collapsed on my couch, and cried out of desperation - how can I keep doing this day after day?? While it would be nice for everyone to understand just how difficult it can be to work with chronic illness, disclosing your condition to your boss may not be the right time to get emotional. In fact, it may serve you to try to stick to the facts. You don't want your emotions to make your employer think your illness defines you, or that you cannot handle your job (2).

By remaining professional, you send the message that your health does not define you, and you are capable of handling a difficult situation well. Often, your employer will see this as a reminder of why they hired you in the first place - you have been a valuable asset despite living with chronic illness (4).

Get support from your doctor. A letter from your doctor to explain how your condition impacts your work could be very helpful in conveying the seriousness of your health condition(s) to your employer (1). Talk with your doctor about your daily job tasks, and some of the work-arounds you have to do just to keep up. A doctor's record of these work-arounds, and how they affect your health, could be especially strong evidence for needed accommodations if you have a reluctant employer. For example, one employer denied an expensive accommodation to an employee because she had been completing her job thus far without it. She may have had a better experience if she had evidence from her doctor to indicate that she could not reasonably sustain her job and her health without the accommodation (2).

Know the law. Unfortunately, not every employer is open and willing to discussing health issues and accommodations in the workplace. If you are not sure how your employer will react, it is always helpful to educate yourself on your rights as an employee living with a disability. You should be especially familiar with the Americans with Disabilities Act (ADA), and the Equal Employment Opportunity Commission (EEOC) may be another good resource. 

If you feel that your employer is not providing adequate accommodations, you can file a complaint with the EEOC and seek a "right to sue" letter. The complaint may be enough to resolve a misunderstanding, or it may be reason to involve higher-ups in the organization to get the accommodations you need. The EEOC will usually recommend that you and your employer try to resolve the issue with a third-party mediator. Discrimination cases are often difficult to prove, so it may also be helpful to make record of any incidents you wish to address (1).

While it is always good to be informed of your rights, many experts advocate opening the conversation about your illness with the assumption that your employer wants to work with you. If you start the conversation by citing the ADA or mentioning other legal avenues, it may turn a would-be productive conversation into a hostile one. Employers often see discussions about legal matters as threats. However, the laws are there to protect you if you have already done all you can to approach the situation professionally (2).


Article Citations

  1. Pompilio, N. (2020, January). Should you disclose your illness to your employer? Brain & Life. https://www.brainandlife.org/articles/deciding-whether-to-tell-your-employer-about-your-condition-is/
  2. Joffe, R. (2016, September 12). How do your disclose you live with illness at work? Working with Chronic Illness. https://cicoach.com/2016/09/12/how-do-you-disclose-you-live-with-illness-at-work/
  3. Driscoll, E. (2019, May 5). The Challenge of working with dysautonomia. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/the-challenge-of-working-with-dysautonomia-r141/
  4. Sultaire, J. (2017, December 8). Your rights at work: Navigating the workplace with chronic illness. Medium Chronicality. https://medium.com/chronicality/your-rights-at-work-navigating-the-workplace-with-chronicillness-2359e7dbb92f

Additional Resources

  1. Disability Secrets. http://www.disabilitysecrets.com/
  2. Job Accommodation Network. http://janweb.icdi.wvu.edu/
  3. National Organization on Disability. http://www.nod.org
  4. Office of Disability Employment Policy - U.S. Department of Labor. http://www.dol.gov/odep/
  5. US Equal Employment Opportunity Commission https://www.eeoc.gov/
  6. But You Don't Look Sick. https://butyoudontlooksick.com/

NOTE:  this article is available in pdf format below.  Printed copies for support or community groups are available by request to webmaster@dinet.org  Please include the purpose, name of the group and number of copies requested.


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