When Dissociation and Chronic Illness Collide
Imagine living with dissociation and chronic illness. Life is challenging enough when you have dissociative identity disorder, and it becomes even more challenging when chronic illness gets thrown into the mix. There are new symptoms to manage and more doctors visits to go to. Emotions come up that you didn't even know existed. Chronic illness changed my life, and also changed how I manage my dissociative identity disorder (DID).
Finding Out I Had Chronic Illness and Dissociation
From Denial to Acceptance to Denial About My Struggles with Chronic Illness
When I was first diagnosed with DID, I spent a lot of time in denial about my DID diagnosis. I took a few steps toward acceptance, but I still kept telling myself that my DID diagnosis was wrong and that it wasn't my reality ("Accepting and Learning to Cope with Your DID Diagnosis"). The denial really got in the way of me getting the help I needed.
My experience with chronic illness was no different. When I was diagnosed with a lung condition called chronic obstructive pulmonary disease (COPD) in 2015, I continued to smoke cigarettes, because I believed the diagnosis couldn't be true. I dissociated not only from the physical pain but from the emotional pain of knowing that my life would be drastically different. It took me a while to accept my diagnosis.
When I was diagnosed with postural orthostatic tachycardia syndrome (POTS) -- a form of dysautonomia -- in 2017, denial became my best friend. Dysautonomia is dysfunction of the autonomic nervous system, which controls blood pressure, heart rate, breathing, digestion, and most of the body's functions. I was told by more than one doctor that I would never be able to work again and that I could not live independently. I didn't want to live that life, so I denied I was sick.
A year later, when I was diagnosed with a more severe, terminal form of dysautonomia, I fell into denial even more. I got a job I should have never gotten. I stopped making appointments with my specialists. I refused to use any mobility aids. If I could just go on living like a normal person, maybe it would mean my diagnosis was wrong. It was the same thing I told myself when I was first diagnosed with DID.
Dissociation Isn't a Coping Skill that Works for Chronic Illness in the Long Run
Just as I had learned to dissociate in childhood to protect myself from abuse, I was dissociating in order to cope with the reality of my illness ("What Is Dissociation? Definition, Symptoms, Causes, Treatment"). The dissociation worked temporarily, but even though I was disconnecting mentally from my illness, I couldn't stop the physical effects the illness was having on my body.
I was passing out frequently, which resulted in quite a few significant injuries. I was having trouble using the right words, enough that I would just point at things instead. All the while, I was telling myself that I was all right. I stopped going to therapy and working with my system because I was spending all the energy I had to make myself appear physically okay.
Then, one day last month, it all changed. I had spent the morning mopping my bedroom floor for the seventh time that month. Usually, I just mop with no emotion at all, but this time, I found myself inconsolably crying. I wasn't mopping the floor to keep it clean; I was mopping because my illness causes incontinence, and for the first time, I was feeling grief over that.
I went to work that night, got a piece of paper and a pen, and wrote (for the first time in months) a letter to my manager, revealing the truth about my illness. It was as much a letter to myself as it was to him. Since then, it has been a whirlwind of emotions, as I stopped dissociating and allowed myself to feel and to grieve.
Getting Back on Track to Living Life with DID and Chronic Illness
I stopped writing months ago because it became difficult for me to find the right words. My illness affects my cognitive ability, and I often get words confused. It's the same reason I stopped my graduate school research because I was afraid I would be labeled as unintelligent or unprofessional and I was too ashamed to ask for help. I feared the same criticism here, which is why I stayed away from writing any articles here or on my personal blog.
While I'm not quite at the point of acceptance of using outwardly noticeable things to help me, like mobility aids, I have been better at asking for help when I need it. My manager knows exactly what to do when I wave at her because I'm about to pass out or have a seizure. I tell people no if they ask me to do something I know would jeopardize my health or safety.
I'm working on getting back into therapy. I no longer have the goal of resolving all of my trauma, because I know that requires a lot more time and effort than I have. But I can still work with my system to make sure that we are all functioning the best we can, even as we start to lose our body's physical abilities. They deserve to be heard and to be given the chance to work on healing.
The hardest part of accepting this illness is knowing that after experiencing 29 years of trauma and abuse, we will not get to experience just as many years of freedom.
Matulewicz, C. (2018, December 13). When Dissociation and Chronic Illness Collide, HealthyPlace. Retrieved on 2023, October 4 from https://www.healthyplace.com/blogs/dissociativeliving/2018/12/when-dissociation-and-chronic-illness-collide
Author: Crystalie Matulewicz
I was diagnosed with did in 2014.by a va psychiatrist and have not had any treatment because I'm told the va has no programs thatthat treat did.the result of not being treated has been extremely traumatic isolationidepression.suicidal.homocidal.fits.of.rage.as.well.dealing.with.complex.ptsd.chronic.pain.from.traumatic.brain..injury.
Sorry to hear about your conditions. I’m glad to see you are still going 😊
I’m an ex medical student with POTS, EDS and mast cell as well as being constantly dissociated.
I spent the last 14 years torturing myself to help others and ‘change things in the world’ for the betterment of others
If anyone else reads this please take the steps sooner rather than later to begin re-integration
At the present moment I’m not sure I will get through to being normal but part of me does indeed hope so
Thank you for your comment. I often wonder if I also will ever be normal given my dissociative identity disorder, but I try to reframe my thought and tell myself I am normal for my frame of reference. I hope you find what you need that makes you feel normal, too. Thank you for sharing your experience.
Thank you for reading and responding. I hope you get to where you need to, even if it's not "normal".
So sorry to here of your diagnoses. I know what your going through and was feeling very alone. I'v not spoken to anyone but my husband & Psychologist about it. I never even knew there was such a thing as support groups for DID since the diagnosis was so complicated. I have DID, PTSD, & BIPOLAR DISORDER along with Lime disease. I already had Fibromyalgia & a few other things already before the Lime showed it's ugly head into our life. Thanks again for sharing your story, it gave me courage to share mine.
So very sorry about your chronic illness. Thank you for this article. We have non terminal chronic illness as well as DID. Plus we are almost 60. We coped by using denial for decades, but now learning to let go of denial ...you are very courageous.