kneel into
self
as thick as
quicksand
or time
as short as
life
this mind: fritz!
still soft
words
then,
dreams of me
on the young
streets
at dusk,
reaching
for night.
(c) Rob Goldstein 2014-2019
Category: Coping with Dissociative Identity Disorder
DID: Chronic Illness and Envy
A few days ago I told my partner I envy people who can live their lives without DID.
He asked how envy made my life better, and I said, ‘It doesn’t. That’s the point.”
No one wants to admit to feeling envy, yet learning to manage envy is crucial to successfully managing a chronic illness.
These days I struggle with an old demon: raised in a culture of disdain for intelligence, intelligent little boys were beaten for ‘showing off’.
The beatings were especially brutal when they came from my Mother.
I’ve spent most of my life avoiding attention and playing second fiddle.
I’m not afraid of succeeding, I’m afraid to be seen succeeding.
I’m most vulnerable to feelings of envy when I’m struggling.
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. Susan Sontag 1978
I’ve always had Dissociative Identity Disorder but I have not always been sick with it.
Prior to my diagnosis in 2009, I had a career, interesting friends, and an active life
One day I woke up and I was permanently too sick to go to work.
I told myself I hated the job, I told myself I’d find another job, I told myself I’d eventually get better, I told myself I brought it on myself, I did not have DID, I was burnt out and needed a rest.
Ten years later, it’s obvious that I’m not going to get well enough to work and I’m getting old, as in elderly.
The difference between fifty-seven and sixty-seven is like the difference between five and fifteen in reverse.
Whose body is this? Whose aches are these?
The problem is acceptance; I know I’m ill and getting old, but I still live in emotional denial.
I still expect myself to be healthy.
Knowing is not accepting and this is at the core of my envy and sense of frustration.
Accepting Envy
Envy is about someone getting ahead of you, someone doing better, someone possessing qualities that you wish you had. You think you are losing the race. You are falling behind. And you are feeling sad, angry, resentful, anxious and you just can’t accept it. Psychology Today
It’s easier to be angry, or sad, to smother envy with somatic symptoms or to project it onto others.
We don’t want to admit to envy. We see it as a petty, selfish, sour-grapes emotion. So we hide it, we harbor it; we disguise it with claims of unfairness or with character assassination. And we may avoid the people about whom we feel envious. You might think, “I don’t want to be around him because it reminds me that they are doing better than I am doing.” Psychology Today
Finally, who wants to admit to wishing ill on the healthy?
Defusing envy is not as simple as not feeling it
Not letting yourself feel or validate envy makes it more toxic; repressed emotions express themselves in passive aggressive ways such as criticizing others, hostile and cynical comments, shaming and chronically feeling unappreciated.
The first step in defusing envy is acknowledging that it really does suck to be sick: life is already hard, and on top of it, you have a painful illness that saps your strength.
It really does suck to have an illness that interferes with your talents and goals.
The illness ends when you die; it’s a fact you have to accept.
In 2009, I could write a six-hour training presentation in less than a week while working full time.
That’s gone.
In 2009, I could walk for miles without panic attacks.
That’s gone.
In 2009, I thought I would be the clinical director of the agency I worked for by 2019.
That’s gone.
In 2009, I was still a young man.
Today I am old.
Acceptance is a daily practice.
Just for today, I can accept my life as it is, and I will let myself feel joy when others succeed.
Just for today, I can focus on my talents and take pleasure in my substantial accomplishments.
Just for today, I can forgive myself for being human and respect myself for having the courage to discuss my envy.
When are you most vulnerable to envy and how do you cope with it?
Rob Goldstein 2019
Ten Tips for Blogging With DID
Here are my top 10 tips for blogging with DID.
- Never leave a negative comment on someone’s blog.
- Never make a commitment you can’t keep.
- Never apologize for speaking your truth.
- Take responsibility when you are wrong.
- Learn as much as you can and keep learning.
- Thank people when they visit your blog.
- Be grateful for having followers.
- Always treat other bloggers with respect.
- There are jerks out there: ignore them.
- Be yourself, especially when who you are seems improbable.
Rob Goldstein 2016-2019
Awards: The Disability Award
Melinda Sandor at Looking For The Light blog nominated me for this award; she is a dedicated blogger and activist and was one of my first Featured Bloggers.
Melinda is also the driving force behind the blogging collective, Survivors Blog Here.
When I saw the name of the award my first thought was, ‘an award for being disabled?’ but based on the nominees it’s clearly an award for people who strive to transcend their disabilities and give meaning to the pain. It’s an honor to get this award. Thank you, Melinda.
The rules are to display the award badge, answer the questions, choose your own nominees, and develop your own set of questions. Melinda’s questions are so practical I’m going with hers.
Fig. 2. Example of reduced regional cerebral glucose metabolism in the anterior temporo-frontal cortices in a patient with dissociative amnesia.
Melinda’s Questions:
What was the first sign of your illness?
My first symptoms appeared when I was a child and found the name ‘Antonio’ scrawled in my schoolbooks. I was confused about my age, name and gender, which set me apart from the other children.
What is your worst symptom and how do you cope with it?
The symptoms of depression and dissociation affect memory and concentration, which makes it difficult read and write.
I often go back to a published post to discover typos and glaring gaps in logic. I cope by writing shorter pieces and relying more on photography and abstract designs for creative expression.
I’ve also stopped judging myself when I find mistakes in the work I post, although it’s frustrating to discover a flaw I would definitely have noticed a decade ago.
As for reading, I do a lot of reading I can’t remember.
This is even true of my work.
I often think I’m reading another bloggers post for the first time and discover that I’ve already liked and re-blogged it.
It’s confusing and frustrating.
What one thing about you has changed because of your struggles?
I miss reading and writing longer, more complex, stories, but I’m learning to be patient with myself, and to set more realistic timelines for achieving goals.
I am more compassionate toward other people.
What words of advice or encouragement would you give to someone else suffering?
I’m changing the last word from ‘suffering’ to ‘disabled’, because suffering does not have to define life with a chronic illness.
My advice is set goals and let go of the way you defined success when you were healthy. Give yourself plenty of time to complete those goals.
Never compare your achievements to the achievements of people who aren’t ill.
Learn new skills and practice them.
I knew absolutely nothing about photography when I became permanently disabled. I still know nothing about photography. but I’m better at it.
Name one good thing that has come out of having a chronic illness.
Now that I have the right diagnosis and treatment, I have a better understanding of the forces that shaped me as a child, and a better understanding of why I made certain self destructive decisions as a younger man. I’m forgiving because of it.
What one thing do you disagree with that is widely accepted as true about your condition?
I obviously disagree with the idea that Dissociative Identify Disorder doesn’t exist. If I go to a shrink and tell her I think I have other personalities and the craziness of it is wrecking my life, I expect her to believe I believe they exist and to treat me accordingly.
I wish the United States had mental health system that wanted to treat the brain’s mind.
If you could change only one aspect of your illness, what would it be?
Some days I get sick of feeling like I’m running in place. I want the illness to go away.
Name the one thing that works best for you for symptom relief.
I get relief from photography or throwing myself into a project. I also try to eat properly, exercise, and get a solid night’s sleep.
Based on your experience, what is one thing that you would tell someone newly diagnosed with chronic illness?
Learn as much as you can about your illness and become your own advocate.Why did you start blogging?
I started blogging to advocate for better medical treatment for people with mental illnesses.
The blog began to shift focus in 2016 and is now more focused on art and politics., but I haven’t forgotten my roots.
My nominees
Most of the disability bloggers I know have gotten this award from Melinda.
My two nominees for this award are Dream Big, Dream Often and Jason
at Opinionated Man.
My questions for them are the same as those asked of me.
Check out Stacy Chapman’s award post at Fighting with Fibro
‘The Dissociative’ (c) Rob Goldstein All Rights Reserved
