Thankful Thursday (July 23, 2020): My Care Team

Posted on by Astrid

Hi everyone! How are you all doing on this warm Thursday evening? I’m doing a lot better than I was earlier this week. I could actually do an early gratitude list, as there’s more than one thing I’m grateful for. A simple list wouldn’t do justice to how huge these gratefuls are though. Let me share. I’m joining in with Thankful Thursday.

First, I still need to update you all on my appt with my nurse practitioner and CPN on Tuesday. It went better than I expected. The outcome is that my nurse practitioner is going to talk to the psychiatrist and see if he can find us a psychologist to do trauma therapy and work on our emotion regulation issues. I don’t remember all the details of the meeting, but at one point, I/someone in me blurted out that we’re in Facebook groups for dissociative disorders. I quickly added that really that’s none of my nurse practitioner’s business, but still we feel a lot of shame surrounding this.

Then on Tuesday evening, a discussion erupted on Twitter about the ISST-D’s guidelines for diagnosing and treating people with dissociative disorders. There’s this article from 2001 that’s still being used to weed out alleged fakers. It uses such things as being open about your DID or trauma to people other than a few close confidants, showing no obvious shame when talking about your trauma, being in support groups for DID, etc., as apparent proof that you’re fake. Now I must say I’m still conflicted about going the actual trauma/DID assessment route, but this did trigger us. However, my support staff are on my side.

We were still recovering from the shame about all this when we heard the main good news I was planning to share here. I got a higher care profile allocated to me by the long-term care funding authority. I still can’t quite believe it, but I’m so happy. The application hadn’t gone out till last week, but this afternoon, my staff got a call that it’d been approved. I’m still waiting on the letter in my government inbox confirming it, but this is really good news. I now have the highest care profile for blind people in the long-term care system.

I was feeling a bit disconnected when I heard the news. Like I said, I still can’t quite believe it, but it’s such amazing news. I’m so glad my staff were so perseverant that they actually applied for this.

Looking forward to hearing what you all are grateful for today.

17 thoughts on “Thankful Thursday (July 23, 2020): My Care Team”

    1. Yes, it’s hard. Here we have a strict distinction between lifelong 24-hour care, which is funded nationally, and any other type of care, which is funded through the local authority. As such, if you don’t need lifelong 24-hour care, you’re heavily dependent on your local authority’s policies. I lived in an area with a good local authority when I still got community care. Now thankfully I get long-term care (the lifelong 24-hour kind) and they cannot take it away from me.

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      1. That last bit is important. Here, benefits can even run to something like a car, which is then taken away as the person dares to improve a little. You can imagine how life-changing that event, in itself, must be for someone. Let alone whatever caused them to need a car in the first place.

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        1. Yes, true. In long-term care here, you can either get care based on development or on stabilization but regardless your need for 24-hour care has to be lifelong. I don’t know what hte financial difference is, if any, but in my case if we’d said there’s any chance of improvement for me, we may not have gotten the funding. That’s after all why they denied it in the first place back in Feb of 2019 (the reasoning was that I should get training and psych treatment and that would eliminate my need for 24-hour care, so it’s not lifelong).

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          1. They assessed my disability last year and reduced it because they assumed that my walking would have improved since the time before. It would have been up to me to then argue the point if I felt this was not the case.
            As it was, I was walking better so I did not argue with them. My main benefit is because of my hand, anyway, rather than my foot (neither work, although I have learned to walk short distances again.)

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            1. Oh yes, I understand it’s hard to argue. We had to appeal the decision to deny me long-term care funding last year and that was pretty hard too. Thankfully with respect to work-related disability benefits, I sailed through each reassessment with ease.

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  4. Oh, that’s a relief and very good news about the appt! I hope something good for you will actually come out of it long-term and you’ll be able to get the trauma therapy in the end.
    Indeed, it’s not your nurse practitioner’s business what you do on Facebook, and there’s no reason to feel shame because you are in groups for people with dissociative disorders. I am on Carol Anne’s DID list as you know, as a supporter, even though I do not have DID nor any other dissociative disorder. I read books, blogs and stuff on dissociation and trauma and multiplicity because I want to be able to understand people better, and because it’s interesting, and because I like to learn new things. I know it’s not the case with you and that you do have a dissociative disorder, but I just want to say that being a part of dissociative disorders community doesn’t really say much about you at all, and it’s hardly something that anyone could rely on to make any assumptions about you.
    I think I’dseen that article, or something very similar in the past. It’s good that there are some guidelines on how to differentiate “fake”/misdiagnosed DID from actual DID, but a lot of it seems so black and white to me personally that it borders on ridiculous, and could be so badly invalidating. I mean, why is it wrong to be open about your DID? I understand that DID is such a very subtle thing and that, contrary to what most people think, (if they know at all that there is something like DID) it’s not something overt usually that anyone would realise you have, it’s very discreet, and also talking about your trauma and related stuff is obviously difficult and could be triggering. But is it really wrong for someone to be more open if they feel enough courage and feel healed enough? What an effective way to shut people up – if you have DID, keep quiet, because if you speak up, you’re a faker. – And why the heck should you feel shame about your trauma? Again, I know a lot of people do and it’s a result of trauma for a lot of people that they feel loads of shame, but it’s not a diagnostic criterion (as far as I know at least) for PTSD, so why should it be for DID? And what’s wrong with support groups? Say you cannot or don’t want or are afraid to talk about your DID to your family, friends, colleagues etc. because they won’t understand or because you feel shame or it’s triggering and hurts to talk about it. I think it’s only natural in such circumstances to turn to support groups, and confide in people who get it.
    It’s all so weird and complex I would surely feel very conflicted too if I were you. But I think what’s for sure is that everyone is an individual so similarly as you can’t diagnose someone or yourself solely by ticking off or not ticking off the diagnostic criteria, you can’t do it either to tell that someone is a faker.
    It’s good your staff are supportive in this whole thing.
    And it’s also amazing news regarding your care, yay! 🙂

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    1. Thanks so much for commenting. Yes, I understand what you mean about being in support groups not saying much about me at all. Neither does whether I show obvious shame. I don’t, but that’s because that part of me is disconnected from the part (Clarissa usually) who does the disclosing of trauma stuff. Usually after we’ve disclosed stuff, we do feel intense shame.

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      1. I get it. That’s another thing that not everyone who feels shame must necessarily show it or show it always, and to the exact extend they feel it. When I open up to people about things that are in any way difficult for me to open up about or express my emotions that I find difficult or that I just generally struggle expressing, I too often feel loads of shame either afterwards or even while I’m doing this. But it hardly ever shows, probably because that’s just the way my brain works that I don’t show a lot of things, but also because if I had to open up to someone, and then also get all my shame out so that they could see it, along with other negative emotions and things I feel about myself all the while expressing the yucky stuff, I would only be left with more shame and more self-loathing and such, so I just usually try to do my best to hide it because otherwise there’s no point in talking with people about what I’m feeling/struggling with etc. and because feeling shame and knowing that everyone else knows you’re feeling shame is simply humiliating. It’s just a coping strategy so it’s natural from my point of view if the same thing happens with you. I guess Clarissa wouldn’t be able to be as good as she is at her job if she had strong feelings of shame or a close connection to another part who does.

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