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My Dissociative Identity Disorder Diagnosis: 3 Years Later

September 6, 2018 Crystalie Matulewicz

Managing with a dissociative identity disorder diagnosis isn't easy, even years after the diagnosis. But some things do get better and more manageable.

A dissociative identity disorder (DID) diagnosis is never easy to handle, even as the years pass. The diagnosis is just the beginning of a very long journey. There's going to therapy, finding medication that helps, trying to work with your system, learning to manage your dissociation and then even more therapy. Managing your DID isn't easy, but it does get more manageable over time. It's been three years since I received my dissociative identity disorder diagnosis, and a lot has changed.

I Have Learned to Accept My Dissociative Identity Disorder Diagnosis

In the first couple of years after my dissociative identity disorder diagnosis, I struggled a lot with denial. I didn't want to believe that I had DID. I didn't want to believe I had endured the trauma that led to it. I had periods when I would accept my diagnosis, but I would end up drifting back into denial.

This is the first year since my diagnosis that I haven't denied my DID. I didn't hide my diagnosis. Even when I was in programs or places that didn't want DID mentioned, I refused to hide the fact that I had DID. It felt unfair not only to myself but to the others in my system. I told people who we were and they accepted us.

Skill-Building Replaced Trauma Therapy for My DID

I spent seven of the last 12 months in an intensive outpatient program (IOP) that focused on dialectical behavior therapy (DBT), which included skills to help reduce dissociation and regulate emotions. It was necessary, as I had a lot of changes going on in my life, including significant health issues, that were getting in the way of me being able to function as well as I could have been.

I needed to take a break from processing any trauma and instead focus on being able to get through all of the challenges I was facing. At first, I was ashamed because I saw it as a sign of weakness. Looking back, I know it was the right decision. This last year has been the most difficult, between getting sick and becoming homeless, and there is no way I would have been able to get through it all if I was focused on processing trauma.

I Have Been Affected By Stigma Against Dissociative Disorders

Never before have I experienced such discrimination and stigma against DID until this year, from hospital workers to regular people. It surprised me because it was something I hadn't experienced in the years prior. I knew it existed, I just never had to go through it. I lost a lot because of it, but I also gained a lot of insight into views that need to change. I hope that one day, we can change them.

What I've Learned So Far Since My Dissociative Identity Disorder Diagnosis

Everyone is on a different path; no journey is the same. The healing process isn't linear. Sometimes you will need a break, or two, or three. You may never know all of your parts or alters. You don't have to integrate to be functional. Not everyone understands DID, and that's okay. I am strong. We are strong. You are all strong, too.

What have you learned since your dissociative identity disorder diagnosis?

APA Reference
Matulewicz, C. (2018, September 6). My Dissociative Identity Disorder Diagnosis: 3 Years Later, HealthyPlace. Retrieved on 2019, June 15 from https://www.healthyplace.com/blogs/dissociativeliving/2018/9/my-dissociative-identity-disorder-diagnosis-3-years-later



Author: Crystalie Matulewicz

Crystalie is the founder of PAFPAC, is a published author and the writer of Life Without Hurt. She has a BA in psychology and will soon have an MS in Experimental Psychology, with a focus on trauma. Crystalie manages life with PTSD, DID, major depression, and an eating disorder. You can find Crystalie on FacebookGoogle+, and Twitter.

Janette Bingham
says:
May, 9 2019 at 11:35 am
Hi all my daughter has had DID for the past 10 days and been admitted to hospital via ambulance x3 in this short period, I’m struggling to cope with the fact that there’s no cure and not much help I desperately need to talk to someone who can help her , could someone tell me can it disappear as quickly as it came, is therapy any help , will she be able to go out with her friends ever again
Thank you for reading
Emorie
says:
May, 31 2019 at 4:39 pm
Hi Janette.

I assume you never got an answer. These aren't very well-visited pages anymore. No, DID will never go away. She's had it the whole time. It has manifested, likely due to a period of extreme stress or an onset in her early adulthood now that the system has "settled." Therapy does help. She will be able to go out with her friends again.

I want to reiterate that her condition is not about you. I know how hard this must be, but DID only happens in people who were severely abused as children. If you didn't do it, someone did. That should be your focus right now, along with supporting her. She must be in a lot of pain. Try to be there for her.
Twyla Armstrong
says:
November, 29 2018 at 10:49 pm
It is still a mixed blessing for me. On one hand, it generates such comfort, finally having an explanation for the transient time and surprises that were impossible to ignore and on the other, it opens even more questions that it seems I may never have answers to! While I have been in therapy for decades for the depression which has allowed for some memories of trauma to be accepted and explored, I am still adjusting to DID. How many alters do I have and how to bridge some communication with them so I do not have the memory gaps and confusion that shifting brings are the biggest issues. I am fortunate so far as my therapist goes, but I still need to find ways to function more productively. It is a blessing to see those express their gratitude with this condition and comforting to know how they have managed to open communication between their primary alters. I too hope I never need to be hospitalized again in the future. It was a blessing to have stabilized space to survive within, but also traumatizing in other ways. It seems that most progress in the area of DID is recent and I hope it flourishes, for all our sakes.
Prefer not
says:
November, 9 2018 at 12:20 pm
I am fiddling with the term in and out as if I want to dissociate the fear that the possibility evokes. I am not ready yet I play the fiddle as if the music coming from me still sounds worth listening too.
Catherine321
says:
September, 16 2018 at 3:09 am
My suggestion is to not tell people unless sharing the information is going to be helpful. People do not know how to react, and I don't need their pity, their questions or their lack of understanding.

Second, it does get better. You have DID, which means you are super smart and super talented. As you are able to stabilize you will find that you are your own best "how-to" guide. You have the answers. There are parts who are guides. You will find your own best system of how to cope. Originally I felt that everything was a democracy and every voice should have an equal vote. Later on I realized that like any family, the adults probably will make more logical and reasoned choices than the babies, so we developed a system of leadership. People had planned times to freak out (during therapy). There were safety rules (Only drivers could drive). My new current therapist is introducing me to family systems therapy, which sounds familiar and okay. My hospitalizations were early on, and now, 24 years later, I would hope to never do a hospital stay again. You will stabilize. The system was built by logic and reason. You are your own best resource to get the stability you seek for parenting/providing.

Now that my sons are grown I am super happy that I used those great coping skills I had developed during trauma to later manage inside life so as to be the best possible parent I could be; to not pass on more trauma or even neglect by virtue of being too focused on myself/ves to notice my 3 beautiful sons who were not part of the trauma, but were at risk of being pushed aside by the overwhelming needs of therapy/treatment. Healing is super important. When you have a child, whatever your issues (DID, anxiety, depression, PTSD, insomnia......) you still need to provide a safe, nurturing and loving parent-child relationship so that the suffering is not passed on. Anyway, because you have DID you must know that you have vast skills that you can tap into to help you function/live/love/provide. Sorry I got so wordy. Hope there is something in there that is helpful.

Mrs.Smith
says:
October, 13 2018 at 7:59 pm
I love this. Thank you for being "wordy." It wasn't too much and it helps me to hear your story.

It was just 2 days ago that my therapist of 3 years dropped the term dissociative identity disorder. I wonder now how long he's known. When I got home and did more research, my mind was blown. This explains SO MUCH. This has definitely been going on, whether or not I knew what to call it, and regardless of how I might feel about it. ....So I've been mostly very happy/relieved to find words for all this craziness.
4 of us
says:
September, 14 2018 at 9:15 pm
It scares the crap out of people. even people who have known me for years. When I tell them what is going on they can't handle it. I have had nurses freak in the hospital. I guess they thought I was going to turn in to an axe murderer or something when the moon came out. I don't know. I have been diagnosed for a year and a half. I guess I am kind of in the denial stage of that didn't really happen to me, you alters are crazy. Something happened to make me the way I am. The thing that gets me is I went from functioning in life, decently, to being nonfunctional because the alters are so active. I have to figure out how to function again. I have a kid to raise and I need to be able to support us. Very frustrating.
sheila Keller
says:
February, 25 2019 at 1:32 am
I had the same thing happen - very functional accpet atrackting abusers- High Functioning and until I was finally diagnosed! Then it all came crashing down the grief, the diagnosis, the system the non healing programs that lied to me for years! I was a pay check for many. After I started associating to the trauma greif ripped through me like a title wave! I became dysfunctional and PTSD was worse then ever. You article about learning to function again makes tons of sense - you write so clear and I have a series of healing books I want to write and wondered if you wanted to partner up on that - we should talk message me on FB https://www.facebook.com/shefish10 I also sent a friends request - iam also starting a A proactive Healing Foundation called Pearl World Wide Healing - my brother commited suicide in 2003 from PTSD and BPD and I am sure largely DID - he wa ssymptom managed and not navigated into healing - just managed and medicated- the site is still under construction and I want one in every state and eventually an inpatient treatment center in Palm Springs - check it out - its ideas and planning and formatted or spell checked yet - we can work on it togther we have to we need a solution driven out reach not a raw raw foundation and I need to add DID stuff didn't have the diagnosis when I started creating the site daughter had an ED disorder and I had what I thought was BPD - no truama knowledge at the time - boy do I need to update been researching this DID for over a year and tons to add! We to navigate people into the proper treatment - I sat for 31 years in therapy where no one would tell me or diagnose me or even say I was a survivor of Child abuse or my brother - its so sad the years and years of ripple effects and suffering! TAK ecare SKK xoxox proud of you!

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