Topic Tuesday // What use is a diagnosis? // 19 July, 7pm AEST

[Former-Member]

@CherryBomb wrote:

I'm wondering if anyone has thoughs on how/if you disclose you have a diagnosis with others? Is it worth sharing it, or should you keep it private? 

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I don't tell anyone my dx because of what it carries. Virtually no one understands it and those who have heard of it either think it doesn't actually exist or have some kind of weird hollywood version of it in their heads.... and for the very, very rare individuals who truly understand it, it tells them more of my history than I'm comfortable with anyone knowing. 

I have told one friend and she's special. 

[CherryBomb]

@Buttertfly summed it up with these words: 

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@Buttertfly wrote:

 But diagnosis is a two edged sword as I feel more shame & stigma now, it feels like I'm never going to be given the opportunity to go back to just being me... now I have a label. 

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While it gives you some insight and explanation into things, stigma and shame are difficult to deal with. A few so far have commented on how difficult it is dealing with others' judgements. It makes me wonder how we could possibly approach this, and reshape people's understanding?

@jb mentioned that the word 'mental' should be replaced - what do others think about?this. @Lisa_M pointed out 'personality disorders' also carry a level of stigma. I wonder if changing the language would help with stigma. Curious to hear what others think. 

[ivana]

Im a bit late to the "party".

I prefer to view it in terms of empowering vs dis-empowering.

Diagnosis is empowering when it is strictly used to guide medication choice or if it provides compassion for that indvidual/s.

Unfortunately,the way that diagnosis is currently used though is often disempowering.

For example,there is little point of diagnosis/labelling if there is no effective treatment (eg: a Dementia diagnosis).

So sometimes people will "jump through hoops" for Psychologists or be tossed back and forth amongst (disinterested) Specialists and endure a very long process to receive a label-but in the end be offered no treatment.

In these situations,diagnosis seems to serve the doctor (or Psychologist etc) curiosity,flawed cognitive thinking,or Narcissism more than it does the patient/s.

A diagnosis ends up being more important for that practitioner than treatment is.

Diagnosis can also be extremely disempowering when doctor/s make presumptions about that patient/s based on their diagnosis or view them through the lens of their diagnosis like that is the person's identity instead of viewing them as a person seperate from their illness/es.

[Shimmer]

Hi @Mazarita 

Thanks for sharing your story. It sounds like the road to a correct diagnosis was long for you too.

I'm so glad to hear that being diagnosed with bipolar has allowed you to access medication that has helped improve your life and relationships so much!

Your thoughtful approach to choosing with whom you would share your diagnosis sounds great. 

You make an interesting point about how the fact that it was your own choice to engage with clinicians made your diagnosis easier to accept - that makes a lot of sense to me.

You seem to hold a very balanced view of your diagnosis, in believing that there may not be a cure for your condition, yet you are able to manage it and live well. I find this an inspiring perspective, thank you!

[mrkotter]

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@CherryBomb wrote:

@jb mentioned that the word 'mental' should be replaced - what do others think about?this. @Lisa_M pointed out 'personality disorders' also carry a level of stigma. I wonder if changing the language would help with stigma. Curious to hear what others think. 

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Euphemistic language has it's own problems. The biggest being it makes it harder to talk about it because you're not being direct.

IMO the word 'bipolar' is a case in point. What does it actually mean? At least the old name also explained the illness.  

[BlueBay]

@CherryBomb

yes i think the word 'mental' should go.  And defintely borderline personality disorder.  Maybe this could be changed to 'Emotional disorder". 

[CherryBomb]

Some wonderful insights and advice from @Mazarita on what to do if you're not sure you agree with a diagnosis

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@Mazarita wrote:

Now, in my 50s, if I were to be diagnosed with something else, I would consider it carefully but would not accept it if I disagreed. I would like to think I would discuss it with my treating doctors. But if I found no satisfaction from them, I think I would seek doctors who I felt understood my situation better. As you say a collaborative approach is best. And if the doctor and client are not on the same page with their understanding of the condition, that is not a good place to start with positive therapy.

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I like what @ivana wrote about having a diagnosis as being empowering versus disempowering, which I think mirrors the differences in experiences in tonight's conversation.

So far, some of the key points raised for getting a diagnosis is:

- Be mindful of who share your diagnosis with.

- Use a diagnosis to inform how you can approach a mental illness. (e.g., regarding treaments) 

- Work collaborative with health professionals. If unhappy or unsure, it might helpful to seek out second opinions. 

[AussieGirl]

The term Post Traumatic Stress Disorder needs to be changed to something like Post Traumatic Stress INJURY and been seen as some other entity other than a mental illness, It happened due to trauma so is an injury like a fractured arm is an injury.

[Former-Member]

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@Shimmer wrote:

You make a really good point about questioning your own insight when you feel like a diagnosis doesn't fit but are hearing something else from professionals. This is where I think discussion with your clinicians is so key, to come to a conclusion together. Do you have further thoughts on this @Former-Member?

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Yeah, it's hard. The power differential is so massive, especially when the diagnosis is a personality disorder. I felt like it was telling me I was wrong, so what basis did I really have for questioning it? It made me doubt everything.

Looking back though now, every time I was given a wrong diagnosis, I felt like they were latching onto one particular symptom and making it key, when it really felt secondary to me. For example, I was diagnosed in hospitals multiple times as BPD because I self harmed. I met none of the other diagnostic criteria for that but they focussed in on my, admittedly serious, injuries, and the rest just seemed to fade out, including the fact that I had no conscious memory of SH-ing. 

It changed when I happened upon a clinician who took seriously the things I had been saying for years. She heard me and asked more and I realised what was actually going on just a few weeks before she did. It isn't all peachy. I'm still having to deal with the fact that my life hasn't been what I thought it was but *finally* I feel like MH 'treatment' is actually helping me. It's annoying that it's taken this long but I'm hugely grateful to have finally got there. 

I want to say to people who feel their diagnosis is wrong to not give up. It doesn't mean the system is totally screwed - it's not as smart as you are - you do know best, but when you can get them on board with you, they really can help make life better. Hang in there 🙂

[Shimmer]

Thanks for sharing your experiences with your wife's diagnoses @leitor

I'm hearing that you found it helpful in increasing your understanding of what's going on and possible outcomes, as well as your knowledge of how best to manage difficult situations and access appropriate treatment.

On the other hand, it sounds like your wife has found different diagnoses very confronting and difficult to accept, which has had a big impact her willingness to engage in treatment, and on you too!

Thank you for pointing out the effect diagnosis can have on the whole family, I think this is something important to keep in mind.