My take on diagnosis, pain and the whole damn thing

plants_and_animals_byerinadempseyThere’s been some writing on blogs I follow about diagnosis, written from different angles. One post simply on the importance and helpfulness of diagnosis, and then some more specifically on the ins and outs of a DID diagnosis.

I have been feeling as if I don’t belong anywhere. And so I read mental health blogs of others who might be struggling in similar ways. And I still don’t feel I belong. Part of it is the issue of diagnosis. I have not chosen a path including diagnosis myself. Partly from having found mainstream medicine somewhat unhelpful, and from my paranoia of the harm a major diagnosis could rain down on my head.

So I’m not labelled. However. I still want to know ‘what is wrong’. I want to find what others in my situation have done about the kinds of issues I face. So I hesitantly diagnosed myself with DDNOS (Dissociative Disorder Not Otherwise Specified). It’s actually called something different now with the publication of the new DSM version – who cares. Ron says I’m on a spectrum of dissociation – a lot further down it than most are, but it’s something everyone does do. That’s fine, but I can’t google that. I can’t find books on that. So I’m sticking to DDNOS privately. It’s like a hanger to hang my coat on, if nothing else.

I’ve found some books that are somewhat helpful. Though I also find books about psychoanalysis, which do not mention parts, helpful. Because a chunk of what’s wrong is not related specifically to parts – it’s to do with attachment, fears, paranoia, etc etc, so many ills the human being is heir to. Having parts is a feature of my personality, but it’s not the only thing.

DDNOS seems virtually absent from the blogging world. So I follow bloggers with the more severe DID. I can relate to a lot of those symptoms – a lot is similar for me. However. Some things aren’t.

DID seems to be a kind of boutique diagnosis to me. It stirs up such strong feelings. I’m not sure why that is. You will get people on the internet passionately advocating that there can be no such thing. It seems to stir up passions that other mental health diagnoses don’t. I can’t imagine someone denouncing bipolar disorder, for instance. Or even the more stigmatized schizophrenia.

From the DID side, there seem to be sufferers who are trying to keep the diagnosis only for their own ‘brand’ of it, also. Very very strange. DID is not a label I would want. I don’t want DDNOS either. Why on earth would I make it up? Why would anyone? I don’t know for sure about DID, but my version of DDNOS is not a side-show of any kind. You would never know I had it, even if you witnessed a switch. You’d make up an explanation for yourself – you’d never think it was a part emerging.

It is hurtful to read jokes about or denials of DID. I feel implicated. A psychotherapist blogger I respect has written disbelievingly about the disorder, that he’s never seen a case in thirty years of practice. I still read him, because I’m interested in his views on other aspects of psychology, but that stung. I don’t know why he’s never seen a case. Does it follow that it doesn’t exist?

In the end, the label doesn’t matter that much to me. Healing is the real issue. That involves remembering, tolerating pain,digging for the truth, allowing other people in, not being too afraid of change. The same kinds of things other conditions require for healing. It isn’t glamorous or special. It’s a worthwhile thing to be doing, it’s hard and it’s painful. Just the same as working through pain that occurs in other ways,  with other conditions.

Art: Plants and Animals, Erina Dempsey

  1. Cat said:

    I don’t completely fit my diagnosis either and I actually doubt those people who do proclaim a text book style disorder. In the case of my own recent diagnosis, sometimes there is a niggling doubt that the Psychiatrist might have got it wrong.

    In the last few weeks, I’ve been meeting other people with Personality Disorders. I can see/feel a common link between all of them, but not so sure where I fit in with my own unique symptoms. That’s not to say I don’t have a BPD, because I most definitely do. It’s just that mine has manifested slightly differently, particularly with the “acting out” behaviour.

    I love following different people’s blogs, even if I don’t particularly relate to their disorder. We all have one thing in common and that is recovery. So, it makes no difference if someone is depressed, DID, BPD, or Schizophrenic, what matters is our comradeship in recovery.

    I’m not sure anyone can say a disorder doesn’t exist just because they haven’t seen it in their surgery. I have little time for people who proclaim they “don’t believe in a disorder when that disorder just happens to be something that experienced professionals have researched extensively. It’s like this thing in the UK when most Psychiatrist “don’t believe” in DID. “It’s an american thing”, they say. In my opinion, it is unprofessional and most unhelpful to normal Joe Blog people, like you and me.

    • Ellen said:

      I haven’t met many people with a dissociative disorder like mine, but I have met fellow abuse survivors, and I tend to see some common ground for sure. As to blogs, it’s interesting, some disorders, though I don’t have them, seem to appeal to me more than others. So I tend to be quite interested in BPD blogs, for some reason, and less so in bipolar or depression blogs. More interested in anxiety blogs. That is just a strange fact I’ve noticed. Not a rule, just a tendency I have.

      I like what you say about comradeship and fellow feeling. What is the point otherwise?

      I didn’t know that about UK psychs. lol.

      Thanks for sharing your perspective on this Cat.

  2. Hope said:

    The thing about complex dissociative disorders is that no one’s is exactly the same. Officially, my diagnosis at this point is DID, but for years it was DDNOS. I prefer the umbrella term “complex dissociative disorder” because it feels more like “me,” for lack of a better term. I have some symptoms that fall outside the DID diagnosis and don’t fit the classic DID profile despite meeting the diagnostic criteria. (My understanding is that, since the DSM-V came out, a DID diagnosis no longer requires that alters take control of the body, nor do you have to have amnesia if alters do take control, so the diagnosis is broader now. Still, I don’t always feel like it describes all of me.)

    But yeah, in general, I don’t care that much what my diagnosis or anyone else’s is. The point is to be able to relate to and support each other since we have some common experiences.

    Sorry, rambling. Not entirely coherent today.

    • Ellen said:

      Interesting, I didn’t know the DID diagnosis had changed lately. And interesting that your own diagnosis changed….It seems like labels are inadequate to describe the complexity of what human beings are. They can be useful, but they’re not definitive.

      I always find you coherent Hope. Thanks for commenting.

  3. Gel said:

    Oh my gosh, this:…..”In the end, the label doesn’t matter that much to me. Healing is the real issue. That involves remembering, tolerating pain,digging for the truth, allowing other people in, not being too afraid of change. The same kinds of things other conditions require for healing. It isn’t glamorous or special. It’s a worthwhile thing to be doing, it’s hard and it’s painful. Just the same as working through pain that occurs in other ways, with other conditions”.

    Ellen your writing really speaks to me on this topic, which I also have pondered a lot over the years.

    wish I had more time to write.


    • Ellen said:

      Glad it speaks to you also Gel. Hope you are busy with some happy type things. take care

  4. weareonebyruth said:

    I was in counseling several year before I read my diagnosis. I read it 10 times trying to wrap my mind around the fact that this was talking about me. My official diagnosis is PTSD with dissociation at a severe level. Now that I have integrated I am still dealing with PTSD. Using parts was how I dealt with the PTSD for years. Counseling gave me other choices of how to function. I read about DID and learned the same thing that you discovered, some people don’t believe it exists. Their disbelief doesn’t change my experience. Focusing on healing and learning new ways to process life experiences makes all the difference. Cheering you on from my desk.

    • Ellen said:

      Exactly. Thanks for cheering me on from your desk. 🙂

  5. candycanandco said:

    So many thoughts when reading this that I end up not knowing what to say. I’ll start somewhere. The psych guy maybe hasn’t seen DID because he doesn’t want to see it.
    I feel the same way at times with what you say about diagnosis. I had the same concerns myself. Getting a diagnosis didn’t really change anything. I still find days where it seems absurd because like you, it wouldn’t be obvious to many and could be explained as a mood swing or bad memory. But I get what you say about having something to hang your coat on and labels can be a helpful thing in allowing us to understand ourselves and find information. But then, every person is unique and even within a diagnosis will fit some things and not others.

    • Ellen said:

      Yes, you’re not going to find something you don’t believe in are you.

      Interesting you feel similar. From what I remember from when you blogged, you have a more clear cut case of DID. But still, it’s not always uppermost is it? It’s just how we learned to be, somehow or other.

      Hope things are good Candy. Thanks for the comment.

  6. DID is not a label I would want. I don’t want DDNOS either. Why on earth would I make it up? Why would anyone? I don’t know for sure about DID, but my version of DDNOS is not a side-show of any kind…“. Just want to let you know, this is something I relate to so, so much (writing as someone who had the D.I.D label attached last year). The often blogged of “D.I.D community” is one I’ve barely dipped our toes into, and won`t be getting further into.

    You are absolutely right; healing is the priority, here and you are putting a lot of hard work into it, and just want to send my/our support your way.


    • Ellen said:

      Glad we feel the same about this BBBR. Thank you. xox

  7. To be fair, I think it’s not that your therapist doesn’t believe in DID, or DDNOS, but that he is not a psychiatrist and so is not working from a tradition that needs to classify and label for insurance purposes or to medicate, which is what the DSM is mostly used for. He’s a relational psychotherapist, so your work together is about relationships, families, trauma, and being a supportive witness to your memories and your story. Labels or not, I think the most important thing is that he is informed about trauma.

    Sharon doesn’t use labels either, even though I’m clearly quite bipolar through and through, and have been diagnosed as such by several different psychiatrists. I think she worries that I will use my “label” to reinforce my sense of difference from other people, rather than our interconnectedness. And also that a label does not capture the nuances of my life – my recent incident on the subway, for instance, was so much more than a bipolar depression – it was about trauma, and a young part taking over, and desperation, and fear.

    Like you, I love to read about my “disorder” — mostly I read autobiography, though. And the occasional self-help book. Do you know Mary Ellen Copeland’s WRAP book? It’s for depression, but so helpful in terms of self-care and survival strategies.

    • Ellen said:

      It’s not at all the case that Ron doesn’t believe in DID or variations, that’s for sure. He helped me find these parts in the first place. Exactly, he doesn’t want / need to classify via the DSM. I didn’t know he was a relational therapist – is that what Sharon is? That is what he does, definitely.

      I like how you think about your diagnosis, thanks for sharing that.

      I haven’t heard of that book. Is it cognitive? I’m allergic to cognitive….Maybe I’ll look for it, assuming it’s not.

      Thanks OBD.

      • It’s not CBT, that doesn’t work for me either. It’s more of a workbook for depression and bipolar, helping you think through what to do at different points of crisis. But I think it’s good for PTSD, too. I think that for those of us processing trauma it’s hard to remember what to do when we are suddenly triggered and shut-down. That’s where I find it helpful, it’s a “wellness” plan that’s tailored to your individual situation and built on the expectation that you are an expert in your own life.

        • Ellen said:

          That sounds good – I’ll have a look for that book, thanks.

  8. Not having the same experiences as yourself or the other posters here, I do see a wealth of information being shared between you all, which is wonderful.

    As with anything, it’s the common experience of the people who do understand one another that counts.

    I understand both the value of labeling as well as the value of removing labels at times. Either way, someone can go too far in allowing a label or lack of label to somehow restrict their experience, or to try and control what someone else has experienced.

    In the end, as you say, healing is what is important. But finding similar people who are working through similar issues allows you to find the tools. However, there’s a spectrum and the one nice thing about not hanging onto a label is that you feel a bit less removed from the human experience.

    After all, human beings have a tremendous variety of experiences and we all fall at differing areas on all kinds of different spectrums, from sexuality to personality to cognitive function. But we’re all still human.

    • Gel said:

      Once again – loving how you put things into words.
      Thanks Aaron.

    • Ellen said:

      Yes, I agree. Sometimes too, people like to see others as completely other, especially with mental health issues. Labels can keep that going. As you say, we are similar and different in so many other ways. And here you are, someone without diagnosis (that I’m aware of anyhow), but you must find similarities that keep you interested. Feelings and life are worth a lot more than a small label. Thanks Aaron

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