Letting Go of Dissociative Living
I'm weary. I’ve been living on the wrong side of my stress threshold for a while now. Part of the problem is that my stress threshold is maddeningly low. But part of the problem is that major things keep happening in my personal life lately; things that create enormous stress even for the most mentally healthy among us. As a result, my Dissociative Identity Disorder symptoms have amplified steadily over the last eighteen months. In the words of my fellow blogger Natasha Tracy, “When life gets nasty disease gets nasty too.” She’s right, of course. But I kept thinking, ‘hey, life is really turbulent sometimes and you just have to rise to the occasion.’ I failed to recognize, though, that doing so usually involves letting go of other, less urgent occasions.
Between a loved one’s suicide, another’s serious substance abuse problem and recently developed severe mental illness, and my own frustrating limitations as someone with Dissociative Identity Disorder, I’ve finally accepted that something has to give. That something is this blog, Dissociative Living. I’m sad about it. I have unrealistic attitudes about what I should be able to do, not to mention a fairly powerful hang-up about “quitting.” I hope that in time I’ll feel less like I’ve thrown away something precious, and more like I’ve made a healthy decision grounded in self-care. Though frankly, this doesn’t feel so much optional as inevitable.
Putting the Living Back in Dissociative Living
I chose the title of this blog, Dissociative Living, as an expression of my belief that one can live a fulfilling life with Dissociative Identity Disorder. The emphasis for me was on living. It's ironic that I've unintentionally used my blog to create distance between myself and my life, my treatment; to live less, in other words. Which isn't to say I don't stand by my work. I absolutely do. It isn't as though it's only a distraction. Far from it. But those of us who use dissociation as their primary way of coping with life can turn even the most meaningful things into distractions. And severe dissociation always comes with a cost. I don't have any control over that right now. All I can do is choose how I pay. I have to give something up, and it won't be my treatment, my family, my friends, or what's left of my mind.
Thanks for Reading Dissociative Living
I don't know if I thought I was going to keep writing this blog forever or what. But I do know I wasn't kidding when I said, "Here's to another year of Dissociative Living!" Part of that is because you've helped make this a rewarding endeavor for me, and not one I'm gladly giving up. Thank you.
You can still find me at Don't Call Me Sybil, though I don’t publish on any particular schedule and have been known to disappear for weeks at a time. Consistency and Dissociative Identity Disorder are natural enemies; it's not ideal, but I’ve been swimming against that particular tide for over a year and, like I said, I’m weary.
Gray, H. (2011, September 30). Letting Go of Dissociative Living, HealthyPlace. Retrieved on 2020, April 3 from https://www.healthyplace.com/blogs/dissociativeliving/2011/09/letting-go-of-dissociative-living
Author: Holly Gray
That said, new students have come through my life and it seems best to keep my answers simple and have them search for more answers on this great www we have. As I came through HP today I read that you have stopped blogging. Wishing you the best and know that your words remain here and will always help those who are searching.
First some background. I am 42 years old and have been diagnosed with the following limitations, DID, complex PTSD, manic depression and anxiety. I have multiple unsucessful suicide attmepts and have been hospitalized 4 different times in 1 year for them. So now I will get to the meat and potatoes of what I am posting about.
Several years ago I filed for SSI Disability and was turned down on my first 2 attempts, no biggie i figured this was going to happen, after my first turn down I hired a lawyer and he submitted the appeal and then filed the appeal for the AJL hearing. Today I had that hearing.
I met my lawyer outside of the room where the hearing was to be held, he told me that we had already won the case because he had spoken with the judge before I had even gotten there, Well then what the hell was I doing here then. We were here for me to go on record. We went in before the judge and we took our seats, we were sworn in and the hearing started. The judge went through the list of my limitations, and asked me if these were the problems that I was having at the current time, I replied that yes they were. Here is where the interesting part comes in, He sat there the whole time and asked me nothing but questions regarding my anxiety and only one time did he mention my depression and he did ask about my subsequent hospital stays. Never once did he ask me about my DID diagnosis not one time did he even mention this, and not one time did he bring up my complex PTSD, now this was very strange to me because these were or are my main diagnosis, it seemed to me to be very strange that the judge never brought this up the entire hearing I even commented during several questions that this was part of my problem, you know thinking that he might take the bait and ask me about how these things effect my daily life, how it takes time from me and how this effected me or how I feel like there are other people in my head trying right now to talk all at once. He never even asked me about how I cope with the things that daily life throws at me. The whole damn time he asked nothing but questions about my anxiety levels. I then finally told him that at this point right now in the hearing that my anxiety was in overdrive and that I needed a moment to gather myself, he allowed us a brief break as at this point I was shaking, mad, hurt and in the middle of what turned out to be a horrific attack. As I was leaving the room my lawyer followed me out into the hall, I then took that time to explain what was happening to me and to ask the all important question, why the hell hasn't he brought up my DID or even my PTSD. He replied that this judge considered my anxiety to be the most important factor in my case, I then replied that the anxiety stems from my DID and my PTSD, I mean for fucks sake where did he think it came from rainbows and ponies? At this point I was on the verge of losing control completely, waiting for the anger part in me to take over and wage holy hell upon this idiot judge and my apparently useless lawyer. Time for me to take a walk, I went and got a drink of water and stood at the water fountain for at least 10 mins just trying to get myself under control, needless to say that I never quite got myself under control. I then went back to the room where the hearing was taking place and I looked at my lawyer and beckoned him to come out the door, I then told him that I wasn't going to be able to return to the hearing at this point, he said alright that we were almost done at this point anyways. He spoke to the judge and then told me to gather my things, I couldn't even walk into the room, noticing this my lawyer then gathered my things and said he would see me in the lobby. Well I figured this was the end of my hearing that I wasn't even going to be considered for SSI, well I was wrong my lawyer met me in the lobby and told ne that we had one that the judge looked favorable on my account and that even the vocational representative even said that due to my overwhelming anxiety and stress factors that she could not recommend even a sedintary job for me for the foreseeable future. So that is it my story of my hearing in a nutshell. I don't even know if anyone will see this let alone reply or even if it will get posted. But I post this here as another example that the public and even the system doesn't give our problems the respect and attention that it deserves. I don't ever want to labled as disabled I want to think of myself as, well challenged certainly but not disabled. Hell I don't know what to call myself. Perhaps one of you can come up with a label for me. Thank you for reading this rant as I will call it.
Sad to see you go. I don't always read, but have often. Your writing is amazing. I'm so proud of you for giving those with DID a voice in this horribly stigmatized society. I know this decision was not an easy one for you to come to, but am glad that you are doing what is necessary to take care of YOURself.
I WANT HELP.. I WANT TO HAVE A FEW YEARS OF LIFE THAT ISN'T FILLED WITH HORROR... OR IS IT TOO LATE CUZ I'M NOT BEAUTIFUL OR ''USEABLE'' ANYMORE.. I'M OLD... I'M ANGRY... I'M TIRED OF MENTAL HEALTH 'PROFESSIONALS'' THAT DON'T GIVE A DAMN.
I'VE FOUND A MAN, A DOC FROM THE 70S WHO DEVELOPED A TREATMENT FOR DID. BUT HE'S 80 AND RETIRED. I FEEL LIKE i JUST RAN INTO A STEEL WALL AT 1000 MPH. MY HOPE HAS BEEN CRUSHED SO MANY TIMES.. I AM REALLY HAVING A HARD TIME WITH THIS. I'VE SUCKED IT UP AS LONG AS I'M GOING TO .. MAYBE I SHOULD JUST GO AFTER MY PERPS.. THATS THE ONLY WAY TO GET ANY HELP.
It's unconscionable that so many people are falling through the cracks in countries like the US where there is enough money (albeit allocated elsewhere) and information to make situations like yours the exception, not the rule. Unfortunately though, most people struggle with finding good DID treatment. Or they never find it at all. Let me tell you the secret to getting help with DID:
Be a squeaky wheel, and never stop squeaking.
I believe our mental health system is set up so that the people who need help the most are precisely the ones least likely to get it. Because you're smart and have access to the internet, you have an edge. Use it. You must advocate for yourself and you must never give up. That means getting out of your comfort zone, asking for information, making a nuisance of yourself. That means not accepting what other people tell you about yourself or what can or cannot be done without questioning it. Don't wait for the courage or the confidence ... do it anyway, the courage and confidence will come later.
Here is a link to the International Society for the Study of Trauma and Dissociation's Find-A-Therapist tool. These are clinicians who have registered with the ISSTD, which indicates they've a professional interest in trauma and dissociation and want to treat it. It does not indicate that they have the expertise to do so. However, it's a start. And I will tell you that I found my current psychologist through the ISSTD and she's very good.
Here is a link to a list of resources provided by the Sidran Foundation (sidran.org). They also have a Help Desk where you may contact them directly with your location and they'll let you know of any therapists in your area that they know of.
Visit the Dissociative Disorders forum here at HealthyPlace.
Share your frustrations with finding good treatment and ask others how they've found treatment. Follow up with any recommendations. Don't give up. Unfair or not, it is my belief that people who are capable of and choose to take responsibility for their own treatment are the ones that get the best treatment. Which is totally backwards, if you ask me. But that's the way it is. You're angry. That's good. Use that anger to fight for the treatment you need and deserve.
Be the squeaky wheel ... and don't stop squeaking.
We the DID community know how much you genuinely care about us and our issues. But you've got your priorities in the right place. You need to look after yourself and your family. We can still catch up from time to time on your other blog, but at least there is not so much pressure there. Look after yourself and know you are worth focussing on. You are a very special person!!
I won't say goodbye as it implies a finality to it. So how about see you around some time and good luck!!!!!!
@Michael, @Mareeya and @castorgirl - Thanks for reinforcing that this is indeed a positive and healthy move. I needed that vote of confidence.
@SarahKReece - "If you’d written a book instead of a blog you’d have to stop writing and send it in to print sometime!" Good point!
@Angela - "Please take care of yourself." You too. ;) You're a courageous writer, Angela. I look forward to keeping up with you.
@Patricia - That means a lot to me. I really enjoyed working with you, kind lady.
@Alistair - My word, yes, it sure is a hard lesson to learn. I suspect this particular lesson isn't through with me yet. Oh and don't be sad ... I love your blogs, you'll be hearing from me often.
@Poser - "I’m proud that you can go and take care of yourself and hope that one day maybe I can do the same." I want that for you too. I can really empathize with your determination and refusal to let something get the best of you ... I find that very admirable. And I think you deserve the reward of some ease and comfort. I'm rooting for you.
@Lu - I love hearing from you, Lu. Your comments are always meaty, lots to digest. I love that. "Trying to put out so much for others - because you have so much to say (and are able to articulate it so well) - and so much to offer as a participant of the experience, perhaps made you feel overwhelmingly obligated to your mission to get the word out." I do believe you're onto something there. Hope to see you at DCMS.
@else - Your comment is so validating. Reading what you wrote, I feel I accomplished what I set out to. That means a great deal to me. Thank you.
@dogwatcher - Oh boy, I have wondered if I'll have to stop driving. It's anxiety for me but I can imagine there are other reasons driving might be unmanageable for someone with a dissociative disorder. I appreciate your comment because it reminds me that it's okay to cut back.
@Lenore - "I have learned so much from all the wonder people who have shared." And we have learned from you. Your participation is part of what made Dissociative Living a success. I thank you for that and for sharing your own experiences, feelings, and insight. I'd love to see you at DCMS!
@Sarah - "I went through something similar about 10 years ago, and I held onto my public face for far too long. The cost was quite high." I've decided it works like this: when something has to give and we refuse to let anything go, life will take something away.
@Kellie - What a gorgeous message this is: "You cannot foresee the blessing to come from the decision to step away from this blog, but I do believe that doing good for yourself opens doors and windows unimagined at the time of sacrifice." And what a hopeful perspective. Thank you. I'm officially adopting that viewpoint!
@kerri - "I won’t say goodbye as it implies a finality to it. So how about see you around some time ...." Perfect. :)
Love, Light and Laughter,
Nothing but true admiration for you, both for your work on this blog, and for making a decision to say "enough" for now. I went through something similar about 10 years ago, and I held onto my public face for far too long. The cost was quite high. I admire you for knowing your limits.
Thanks for your work in advancing the conversation about dissociative issues! I'm hoping Healthy Place will leave your archives publicly available, as there is great value in them.
Take good care of you! All of you.
I've been following this blog for a little over a year now. I have learned so much from all the wonder people who have shared. It has helped me understand myself with DID much better.
I will miss you here, but glad you are taking care of yourself first.
I will look for you at "Don't call me Sybil"
i'm sad to see you go but i totally understand and applaud you scaling back to safeguard your health. i've had to do the same for several years-- i haven't worked for 6 years and now i've stopped driving too and reduced a number of other activities too; it's been a healthy decision for me and my system.
i always enjoyed your blog and will keep reading DCMS.
best wishes to you!
I admire the choices that you made about not exposing your system or discussing your trauma history. I’m not criticizing the people who do write from that extremely personal position. Of course, I’m glad for them to connect with the wide world in any way that helps their recovery. Personally though, your more journalistic approach was a lot more useful for me to read. Your balanced and thoughtful style is a real gift to us all, and it is so unique in this field of conversation.
Your constant reminders that disorder is about affect on your life, not just being different, has been an anchor for my self esteem and helped me to ask for help when I needed it.
I still remember your metaphor for living with DDs as being like having a constantly crashing hard drive for a brain. So true.
I remember the way you rallied to help Brian, a reader who was going through a hard time on the brink of a diagnosis.
You have done great things here. Thank you for your writing. All the best for you and your family in the future.
I don't think that any of us who have this -- um, affliction? -- can rely on our exceptional intelligence, creativity, and determination to 'super woman' it out. We reach a point where we need to scale back our expectations (hopefully temporarily) of what we can, or feel we should, do to be productive and contribute to society.
(I'm thinking now of one of those old train whistles blowing off steam with a penetrating scream for the relief of, or expression of, excessive pressure)
Sometimes disability is an unpleasant reality of where we find ourselves. I'm glad you are taking the time now to concern yourself with yourself. Trying to put out so much for others - because you have so much to say (and are able to articulate it so well) - and so much to offer as a participant of the experience, perhaps made you feel overwhelmingly obligated to your mission to get the word out.
What you did here at this site, and at your blog DCMS, I think was really important for both those of us engaging this journey first-hand, as well as for those who need to understand the journey, but experience it more objectively; not as immersed in it. I sense that your mission to go public - and consistently too - come at significant cost to yourself and I have often wondered how you can then heal yourself, and how can you communicate your experience of healing if it becomes too much for you? I think one of my biggest frustrations has been my inability to rely on myself consistently, and to make commitments to others that would allow me to have a 'real' job. I've been amazed at how you have managed to 'show up.' and to do so with the courage and apparent presence of mind that you have shown. Sure would like to know those tricks...
I fully support you gathering yourself for this time, and I am encouraged that you know yourself well enough to say this is best right now, though many of us, me and all, will miss you.
Sad and sorry to see you go. Thanks for all the insight. I'm proud that you can go and take care of yourself and hope that one day maybe I can do the same. Yes, life sometimes throws things at us that pile up and pile up untill the bridge caves in...recognizing that cave in BEFORE it happens is admirable. I don't have that skill down yet, but once again you lead the way. Thank you for all you've done for me and the others.
I feel like I was just getting to know you and have so much admiration for you. Now I'm sad. But I am proud of you that you are doing what you need to do to safeguard your mental health - that can be a hard lesson to learn.
Very best wishes,
I'm glad you're taking care of yourself, but sorry to see you leave.
I wish you well, and plan to read your personal blog. Please take care of yourself. That is the most important thing!
I only recently came across your blog, and I just wanted to say thanks for writing! I have and now blog about a dissociative disorder myself, and I've found your blog very interesting and thought provoking. I think it helps so much to have people like us share and humanize conditions like these which are so often sensationalised and misunderstood. It really sounds like wrapping up the blog for now is absolutely the right thing for you to be doing, please try not to look at it as if you've failed anything. If you'd written a book instead of a blog you'd have to stop writing and send it in to print sometime! :) It'll still exist for people like me to find in the meantime, and you can restart again later if that's what you want down the track. You've done a great job and thanks again for sharing.
All the best, Sarah
"But those of us who use dissociation as their primary way of coping with life can turn even the most meaningful things into distractions."
A distraction is still a distraction, even when it's meaningful. For me, I see my distractions as a way that I, in a sense, 'dissociate on purpose'. To neglect other areas of my life that I should be tending to. When we add these distractions to the fact that we are already severely dissociative, you are right.... it comes at a cost.
So I am here to say that I support you 100% . This is indeed self care. Don't doubt that for a minute. I'm so sorry for the turbulence that you've been experiencing in your life, but I'm glad that you are taking the steps needed to care for yourself properly. Before you can help those that you care about, you must first care for yourself.
I'm so grateful for the knowledge I've gained, and mostly for the way that you have shared *your* experiences with Dissociative Identity Disorder. You have done some very important work here that has truly made a positive difference in my own life, and I'm sure in the lives of many, many more of your readers.
Best wishes to you! ~ Mareeya
I want to be one of the ones to thank you for all of your hard work, honesty and fantastic intentions in making the social networking and blogging world a better place! It will be good no matter what to know that you are still out there and keeping your website ... and whatever other possibilities are up to you. You are also setting a fantastic example to *everybody* by listening to, and taking care of yourself.
Godspeed in everything, Holly. Best.