The Risks of Being Open About Your DID Diagnosis
Disclosing a dissociative identity disorder (DID) diagnosis is a personal choice. There are many options regarding dos and don'ts of disclosure, and all of the pros and cons should be considered before making a decision. It is especially important to consider the risks of disclosing a DID diagnosis, and be prepared for any negative consequences that may come as a result of being open.
Being Open About Your DID Diagnosis Can Have Negative Effects
While acceptance of mental health issues has improved over the years, there is still considerable stigma surrounding mental illness, especially DID. Many people wrongly label people with DID as crazy and unstable. They believe that DID makes a person dangerous. The truth is that many with DID lead normal, relatively stable lives.
Disclosing a DID diagnosis involves considerable risk (Should You Tell People You Have a Mental Illness?). There is no guarantee how the person will take the news. Some people end up being very understanding, and they can become strong sources of support. On the other hand, some people may respond by pushing you away. Even being open about DID to other family members can lead to being ostracized from his or her family.
Being Open About My DID Diagnosis Affected My Life
When I accepted the position as writer for Dissociative Living nearly one year ago, I knew that meant the world would know about my DID diagnosis. I did not want to be ashamed of my disorder. I wanted people to know the real me, and DID is part of the real me.
I never expected my DID diagnosis to be used against me. Unfortunately, someone found my posts here and on my personal blog and reported them to the school I attended. All of a sudden, my DID diagnosis became a concern (Dissociative Identity Disorder DSM 5 Criteria). It didn't matter that I had a perfect GPA and had done excellent work. Instead of outstanding student, I became the person with that 'dangerous' dissociative identity disorder. My diagnosis trumped all of the good work that I had done.
For the first time, I became ashamed of my disorder. I cut myself off from the DID label. I didn't want to talk about my DID in therapy. I considered leaving Dissociative Living, fearing that any person that found the blog would use my DID against me. I was afraid that this diagnosis would follow me forever, and prevent me from achieving anything.
I know that if I never wrote this blog, if I just hid my diagnosis from the world, I wouldn't be in the situation I am in today. I'd still be in graduate school, working towards becoming a licensed counselor. But then I would have never had the opportunities I have had, I wouldn't have had the chance to share my story with others and to learn from others' experiences as I have so much in this past year.
A DID Diagnosis Does Not Define You or Me
I'm not ashamed any more. I am not to blame for my disorder. I should be able to be open about it without being judged. I am still a human being. I am an intelligent, caring, kind, and passionate individual with the potential to do really amazing things. I also happen to have DID.
Never judge a person by their diagnosis. It's just a label. Peel the label and look underneath. That's where you'll find the true person.
I spent most of my life in silence because I didn't have a choice. Now I have choices, and I will not be silent anymore. I have dissociative identity disorder. It does not have me.
Matulewicz, C. (2016, July 20). The Risks of Being Open About Your DID Diagnosis, HealthyPlace. Retrieved on 2022, June 25 from https://www.healthyplace.com/blogs/dissociativeliving/2016/07/the-risks-of-being-open-about-your-did-diagnosis
Author: Crystalie Matulewicz
I have DID, and I, too, was a straight-A student in college. I graduated as an undergrad, but I never moved forward with a pursuit in grad school or a doctoral program because of my disclosure about DID. I was not supported or treated properly at the time, and I was retraumatized. I relocated to a new state in order to rehabilitate and heal. However, the pandemic hit, so that worsened my condition. I now don't know if I even have a future in research or otherwise. I dissociate more often now, and I've been triggered every day since the advent of this pandemic. I tried to reach out to friends online for support, but a few of them have decided not to be my friend after I disclosed my DID. I made that mistake twice, in my most vulnerable times. I was looking for guidance and support, and I found some support recently. I also have a really great therapist. The problem is, there's not too many local support groups for dissociation, and most of the local groups exclude those with DID specifically because it is deemed "too triggering" for those with DID. I agree with the "too triggering" statement, but I really hoped that there would be safe therapeutic groups that were local (online, that is) for people like me. It's hard to be part of groups that are peer-led because I've not found those groups healthy for me unless it was led and managed by a mental health professional. I wish I could have not disclosed my DID anywhere, because then my life would be less restricted. I'm still dealing with the losses and grief over those losses.
Hi, I was wondering if you had to leave school because you were forced to or because you no longer felt welcome? I guess what I am getting at is that DID is a disability and if you were not treated fairly in school or were forced to leave you may be able to fight them on it. I am not sure if it is covered under the ADA but wouldn't be surprised. I don't want to ask and therefore hash up any bad memories for you, but I am curious because I went through something similar and I want you to know that you may have options!
Hope all is well.
Thank you for asking - and it doesn't hash up any bad memories. It was a complicated situation. The school was delaying making a decision, and I wasn't comfortable with them saying that I was putting others' safety at risk, so I decided to leave before any decision would be made for me. I just wanted to be in school, and not have to fight to learn. It was easier to just leave and find somewhere else to settle.
"I have dissociative identity disorder. It does not have me." I love that line.