Disclosing in the Workplace


To Disclose or Not to Disclose in the Workplace – That is the Question

Living with and managing a chronic condition like hydrocephalus affects all aspects of your life, including the workplace. Whether you were recently diagnosed or have been living with hydrocephalus for many years, the question, “Should I disclose my condition to HR, my supervisor, or co-workers?” has likely crossed your mind. Feelings of fear of stigma or discrimination are not uncommon, as well as concerns about the timing of disclosure, if you know there is a likelihood that you will need to be absent from work (on a short-term or long-term basis) to care for your hydrocephalus and related needs.

The decision to disclose your condition in the workplace can be a complex one, which requires careful thought, planning, and consideration. There are many good reasons to disclose and benefits from doing so. For example, disclosing can help you naturally introduce discussions about strategies in which you are most likely to be successful, such as providing written instructions and/or procedures instead of exclusively verbal, if you struggle with hearing or memory challenges. However, it’s important to note, you are not required to disclose personal medical information to your employer – and once your condition is disclosed, it cannot be taken back.

Also, remember that you are not required to disclose to anyone to whom you do not feel comfortable. Your privacy is important, and in addition to deciding if and when you will discuss your health history – you have the right to choose with whom you will discuss these topics. As you decide, consider the questions:

  • Do I think my representative in Human Resources needs to know?
  • Do I think my direct supervisor needs to know?
  • Do I think my co-workers need to know?

Disclosing to one or more people does not mean you need to feel obligated to tell all members of your team and/or share the same details with each person. Remember that you control your message, and reserve the right for privacy to be maintained if you would like.

Before making the decision to disclose, remember that the decision you make could have immediate and long-term implications for your employment. It’s important to weigh your options, the real and perceived advantages, and disadvantages, and carefully consider who you will disclose to, when, and how. This is your story and your health, so it’s important you feel safe and secure in your decision either way.

What You Need to Know

1. Ensure you have correct facts about hydrocephalus – and know where you can point others for more information if they are interested. If you plan to share facts about hydrocephalus and related diagnoses, you will want to be sure you are providing accurate information. Be clear when you are sharing facts versus personal experiences, so others will know what from your journey is typical versus unique.

2. Decide the appropriate timing of your disclosure based on your workflow. If the last week of the month is always extremely stressful for your boss, you might want to consider waiting until the next week if possible to have the conversation – so you know he/she will be more likely to have time and energy to contribute to the conversation.

3. Consider where you will feel most comfortable discussing this potentially sensitive topic. For example, if you are telling your team members collectively, perhaps you will want to ask your supervisor if you can share in a staff meeting. Or perhaps if you are going to be meeting individually with your HR representative, you will want to decide whether the meeting is in their office or in your workspace.

4. Decide ahead of time how much you want to share. Sometimes when we are discussing items that are personal, we can say more than we intend, or share details we would not otherwise want others to know. In thinking through what you plan to say before the conversation, you will have set clear boundaries in my mind (if necessary) about anything regarding your hydrocephalus that you don’t want your work colleagues to know.

5. Read the reaction of your audience. Some people are uncomfortable discussing personal matters at work, or squeamish about discussing health conditions. Be certain you are reading the non-verbal cues of your audience to know if he/she/they are open to hearing more or if you should abbreviate your disclosure. It’s important to be respectful of the boundaries other people set as well.

6. Help others see that hydrocephalus and related diagnoses are just one piece of the wonderfulness of you. While it can be challenging, time-consuming, and life-changing, you are also many things to many people – and possess talents and skills, demonstrate success in your daily actions, and enjoy being surrounded by your loved ones.

Also, if you choose to disclose your hydrocephalus at work, we encourage you to additionally share with others the ways they can support you in your journey by attending a local WALK to End Hydrocephalus or supporting your WALK team. This may give you all an opportunity to build team awareness together, and support our WALKs to End Hydrocephalus!

This article was written by HA volunteer, SarahAnn Whitbeck.

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