One of the most important things you have to decide when you have an invisible disability (what I like to call, “invisibility”) is when to “come out” or disclose that you have an invisibility. This can be different depending on to whom you are disclosing and what your invisibility is. Here I will share with you my personal experiences of disclosing, and discuss when, where, why, how, and to whom you should disclose, and also why not to disclose.
Disclosing, or coming out, is a big decision to make when you have an invisibility. Some people will tell you to come out right away, some people will say not to at all, and others will have an opinion anywhere in between. The most important thing is to do what is comfortable for you. That being said, there are some things critical to making that decision (and these come in no particular order).
You have to know WHO you are talking to. Is it your friend, an employer, a doctor, a colleague, a teacher, or just some random person? This matters because the way you talk to each person, but also what you disclose, is going to be different in each case. For me, I usually tell a doctor that I have autism or dysgraphia or thyroid cancer. An employer, I tend to go more into the question of, “What does this mean and what does it not mean?” and try to make sure my capabilities are still known, and known first.
Disclosing, or coming out, is a big decision to make when you have an invisible disability (what I like to call, “invisibility”).
To do this, I also have to know WHY I am disclosing to such people. If I am talking to a doctor, I’m telling them because I want the best care and to make sure that no health issues come along. As long as they treat me respectfully, I am not as worried what their perception of me is. An employer, on the other hand, I am telling because I want to be able to have the accommodations I need to be as successful as I can at doing my job. I do not want them to think that just because I have some needs I am not going to be a hardworking and valuable employee. With friends, I am telling them because I want them to be able to understand me.
I am not going to tell my employer about my social anxiety or high-functioning autism unless it has a major impact on my work. The same goes for friends who I tell about my social anxiety or other things; they generally don’t need to know about my learning disabilities.
Knowing why I am telling someone is important, and so is HOW to tell people. The how of this is not only the socially appropriate way to disclose, but also determining how much you really need to disclose. I am not going to tell my employer about my social anxiety or high-functioning autism unless it has a major impact on my work. The same goes for friends who I tell about my social anxiety or other things; they generally don’t need to know about my learning disabilities.
WHEN is especially important with friends, but can be a good thing to know with employers. Usually with employers you want to disclose right away if you need any accommodations. But sometimes you may wait to disclose medical conditions or other things until they know you better and see that you can work despite them; you may decide not to tell them anything at all. With friends, first of all, you want to make sure they are someone who can handle the information and make sure it doesn’t change their perception of you. Second, you generally want to know them for a bit and let it come naturally, either through conversation or if questions arise from some of your actions.
Disclosing is for you, not for other people.
Disclosing is something you do have to be careful about; and you can choose not to disclose as well. Disclosing is for you, not for other people. You have to realize disclosing can change the way people look at you, either for good or bad. For example, a lot of people who know I am on the autism spectrum before they meet me treat me as if I am much younger than the people who know me first and then learn about my autism. Some people become more protective of me when they learn I have ASD or depression. Some people though, can be more empathetic to what you go through and even be helpful.
Sometimes people who have known I’m on the autism spectrum or other things judge who I must be before they meet me.
Sometimes people who have known I’m on the autism spectrum or other things judge who I must be before they meet me. I have had people who have talked to me in a child’s voice or even asked if it was okay to shake my hand. This can even happen with people who you disclose to. I was on a retreat for my college and they had a secret ceremony and no one was supposed to know what was going to happen. They pulled me aside and told me what was going to happen because they thought the surprise would be hard for me and even asked if I was okay being hugged. It made me feel bad because I knew they saw me as different.
Another interesting thing that happens to me when I disclose is that people commonly say, “You don’t seem autistic.” While they are trying to give me a compliment, it has mixed meanings. Also for other things such as dysgraphia, people ask if it is even real.
Sometimes coming out can be helpful.
Sometimes coming out can be helpful, though. In school, teachers were willing to work with me to make sure I could get my work done. Friends can be accepting and we can even have lively conversations, or they can be considerate when we go out and understand that some places can be overwhelming. With my thyroid condition, people are careful not to push me too hard, and make sure I get enough sleep and food.
In the end, disclosing is a personal decision that should not be taken lightly.
Founder of Jason’s Connection – an online resource for those with disabilities, mental health, aging and other needs. Jason was awarded an M.S. in Cultural Foundations of Education and Advanced Certificate in Disability Studies from Syracuse University. Jason is also a Project Coordinator and Research Associate at the Burton Blatt Institute, an international think tank for Disability Rights and Human Justice at Syracuse University. He regularly contributes to the blog in his own series called Jason’s View and travels the country consulting and speaking about disability issues and rights. To read more from Jason Harris, read Jason's View.