How important is the diagnosis to you?

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#1

If you’ve been formally diagnosed with ADHD, how important is that diagnosis to you?

What would you do if someone ever took that diagnosis away?

I was previously diagnosed with ADHD but now a new provider disagrees. How have other brains handled that in the past? Shopping around for a new provider doesn’t seem like a good option at this point because at least this provider is continuing my medication. I just feel a lot of negative emotions about having the diagnosis questioned or taken away.

Update:

I met with the provider who seemed to be questioning the diagnosis. I confronted them directly about the issue and what was in my chart. They reviewed it and noted the ADHD and agreed to continue to treat it as valid. It was such a huge relief. So, I just wanted to pass along the advice, from my own experience now, to speak with your provider if you have questions or concerns. If you advocate, you may get your needs met.

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#2

I… would seriously question the reason this provider is taking it away. That is… odd to me.
To answer the question, it is the world to me. It means I can reliably get my meds. I can talk to my workplace and and have an informed conversation on accommodations. It validates me as a human and employee that I am not broken in character, but have a physiological disorder that affects my ability to do anything. It is very close to a part of identity, if only because it informs me on something I am NOT (Lazy, rude, etc) and so greatly affects me both treated and un-treated.

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#3

I don’t have a diagnosis (it’s still being considered) but if I do have ADHD it would be very important to me to have the diagnosis as well. I think it gives additional security in dealing with the healthcare and insurance system, especially since stimulants are more restricted meds

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#4

While I was still being diagnosed, pretty much everybody I know tried to convince me that I didn’t have ADD, I was just being dramatic etc. and I should calm down and get a life or something. I was almost ready to believe it right before the diagnosis, or at least to accept the possibility of not getting diagnosed. I knew that a lot of the tips and advice I’d picked up in connection with ADHD were already helping, brain or not. So at least I could keep that up. For a while, anyway. You know how it is with keeping something going when you’ve lost the faith that it’s the right thing for your particular needs…

I was really just bracing myself for the worst possible case: a doctor, pretty much the only one in town who diagnoses ADHD, telling me I just suck and that’s all there is to it. Seriously, any diagnosis would have been better than nothing. I really don’t know what that would have done to me.

The diagnosis turned all those doubts into an action plan. It meant there was something I could do to get back in control of my life. I had something not-so-vague to work towards! And I’d be able to afford it, too! Because needless to say, both the medication and the therapy just wouldn’t have happened without the diagnosis.

So, yeah, it meant everything at the time. If it was taken away now - I don’t know. Aside from the obvious (the parts covered by health insurance), it would probably raise a few doubts again, at least in the long run. I don’t know if it would wreck me the way a non-diagnosis would have back then, but it would certainly slow me down. But I’ve spent over a year getting bits of my life back since the diagnosis, so it would take a little more to almost convince me I just suck than it did before the diagnosis. I hope.

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#5

the diagnoses of ADHD to me was not that important due to the fact i was diagnosed in 4th grade so 8 years ago however it explained a lot of my behavior.
I would seriously question and no longer communicate with them.
It plays a role in my identity so it basically taking away a small part of my identity that I am trying to understand. It like asking anyone how would they feel if their identity was not valid in the world or if there identity was attributed to the loss during the war.

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#6

It means a lot to me. It means that a lot of my behavior episodes in childhood weren’t nearly as in my control as I was told (and punished as if) they were. It means that I can seek out targeted treatments that are effective in guiding me through life. It also gives me a large body of peer-validated research to draw on when I have trouble with something.

If someone took it from me, to be honest, I would do the same thing that you did, and if that didn’t work I would probably go back to self medicating. The bottom line is that the way my ADHD impacts me creates a ton of instability in all areas of my life and when I self medicated I created a level of instability that I could manage.

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#7

I thought I’d revisit this post.

I met yesterday with my therapist and talked with her about how I was looking into ADHD coaching. She and I haven’t really talked much about my diagnoses since we began therapy, and she defers to my PA about that and medication. When I brought it up yesterday she said that she didn’t really see ADHD as an issue for me and that most of our work had focused on depression. She asked me if I had been tried on medication for ADHD and if I found it helpful. I told her yes and explained more. She then said that there are people trained in testing who can also help diagnose. I told her I already had that testing when I first started at the clinic almost two years ago. She then went on to say that maybe it was a concern but not something we had talked about in treatment. She generally presented the attitude of not viewing the ADHD diagnosis as valid.

I felt hurt and disappointed. I’ve worked with her for a while now and she’s so good at supporting me in other areas. I felt anxious and scared that she was discounting my diagnosis and worried she would try to change or adjust it. I tried to give her a sense of some of the things I struggle with daily and some of the reasons I am looking into coaching. Ultimately she said that it’s not really something that she specializes in but she does believe it is a real concern for some adults and that I could always read books and get more information. I told her I’d done that already.

I just feel frustrated and hurt. I’m still processing it, but I’m also reconsidering if I want to continue working with her or if I want to spend time educating her on ADHD and my experience with it. I don’t necessarily want to leave because if I stop seeing her I might have to stop seeing my PA who provides my medications which are so so helpful.

I just thought I’d share that I had been given this diagnosis and it helped bring so much into focus and helped me so much, but that a provider I trust doesn’t believe in it. It felt incredibly invalidating. I’m guessing other brains have had this experience. If you have any advice on how to process this or move forward with my therapist, I’m definitely open to that.

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#8

It explains my problems. I received a diagnosis 16 days ago. The psychiatrist, said my problems were overwhelmingly ADHD, from the first minute of the assessment.

He said I achieved far below by potential, due to me being well behaved in school, intelligent and driven.

He has prescribed Concetra. I have inattentive & hyperactive ADHD.

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#9

I’m sorry you’re going through that. I think the diagnosis represents a lot. Like @JudasTheHammer said, it validates your character! ADHD symptoms really beat up your self-esteem, and I think for a lot of people (myself included) the diagnosis was a huge relief because it meant that the things “wrong” with you aren’t your fault.
It doesn’t seem right that she on the one hand admits that she doesn’t specialize in ADHD and at the same time casts doubts on your diagnosis (which presumably was provided by someone who is knowledgable in this area). But you trust her and so of course you would be hurt and frustrated. I think I would feel the same way if I were in your shoes.

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#10

Personally: vital to the point where I would see someone else if I felt my diagnoses and support were at risk.

It’s not common, but it does happen where a medical professionals interest causes them to over step the boundaries, regarding the details of their service to you.
For example, my wife has seen a medical professional for one issue, but they keep insisting on tests and questions regarding issues outside of his expertise. She had to politely refuse as that was not his place and she already had a team of doctors looking after the issue he was concerned about.
From what you’ve explained, it seems your scenario is similar by principal.

She’s admitted her lack of expertise, which to some extent has discredited her opinion of non-support. :thinking:
If she really is still helping you with other areas, perhaps just continue seeing her for those issues and look into advice regarding ADHD coaching elsewhere?

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#11

Thanks for taking the time to respond. :slight_smile: What you said definitely connects, including how the diagnosis was a huge relief and also that she isn’t that familiar with adult ADHD. I should try to remind myself of that. I appreciate your feedback!

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#12

Thank you so much for the response!

I appreciate what you said about providers overstepping at times. It’s reassuring in a way to know that others have that experience. I also appreciate your point that since she has a lack of expertise or focus in the area that I should be cautious about her opinion.

I will probably continue to see her for the other issues and may still look into coaching. Coaching is expensive, though, so that’s my biggest hesitation. Thank you for the support!

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#13

I’m so glad you got that sorted!

I was diagnosed 2 days ago. And it’s huge for me, at least with how my brain works. I was already starting to use a lot of ADHD tools and finding that they helped me out a lot but there’s something about me that without an actual diagnosis I kept worrying I was just looking for an excuse for the things I struggle with.

I’m not sure how I would feel if a doctor argued me on it later, but I know it would upset me. I’m starting to deal with that now just from a few family members and it’s very counterproductive. For me the diagnosis is like “YES! You struggle with [these things]! But you just need to learn how to work with your brain instead of against it!” And taking that away would put me back in, “Wait, am I just VERY BAD at being an adult? Should I go back to being mad at myself?”

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#14

Guten tag, everybody. This is an interesting question, to me.

Q: How important it the [ADHD] diagnosis to you?
A: immeasurably

I lived the first 40 yrs of my life:

  • without knowledge of what my “problems” were/stemmed from
  • surrounded by family who didn’t give positive care to mental illness, didn’t actively care much for their loved ones who had mental health issues, who saw/practiced hiding emotions other than (often feigned) effusive joy, and who often exploded due to hidden emotions
  • surrounded by a family who loved me, but was unable to support me the way I needed
  • being the funny and/or artistic one
  • living with a perpetually growing tool belt filled with coping mechanisms
  • often beneath the surface of my ocean of fear; anxious, self-loathing, terrified, emotionally thread-bare, hair-triggered to flee/hide (rarely fight, but I’ll speak to that later), rage-filled, seconds away from crying
  • full of love (so, sooooo much love…usually only for others), hope (sounds hard to believe, but true), dedication, wonder at all (seriously, y’all, I would’ve been an explorer if Dora hadn’t interviewed just before me), justice, creativity, humor, compassion and kindness
  • …the above are only some of the bits I could think of, and if I spent more time I might not ever complete this post…and boy-howdy, is not completing things one of my specialties!

The day I was diagnosed, I left my pysch’s office with my prescription in hand and headed straight for my pharmacy (which was between my psych’s office and my house). I got my scrip, a bottle of fizzy water, and went outside to the bus stop, anxious to get home. Next, I did - what I can imagine didn’t look sketchy at all - what I decided I couldn’t wait any longer to do: I took my first ADHD pill at the bus stop. Seven minutes later I was at my house and I started to clean, organize…I stopped and checked out my thoughts. What was happening inside my noggin was familiar and alteringly different: I had all of the same wealth of buzzing ideas which I was used to having, but they seemed lined up along a path which I was walking along, and I was able to look at them, consider them, and choose how/when to address each one. For the first time in my life I was able to DECIDE what ideas to address. There weren’t any fewer potentially-maddening ideas, there was a new ability, though, that of “focus/decision”.

My life in the last few years has been nothing short of interesting, amazing, challenging, painful, scary, and awesome. But these descriptors, and many others, have all been more easily addressed through a more therapeutically clear mind.

My diagnosis changed my life for the better, in ways I’m not sure I’ll ever fully understand. My ADHD life is still new, is not “normal”, is not anyone else’s, is not perfect, but it’s mine and it’s a canvas which I can create on in new, potentially more compassionate/healthy, ways.

Peace, hermanos. I wish you all the best.

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#15

I had read but totally forgot to answer this tread! :sweat_smile:

I think proper diagnosis implies in the possibility of getting to the proper treatment for whatever thing you have (adhd or whatever it might be), going undiagnosed can be much more harmful and damaging specially in the long term, as the fact we being unaware of it shifts all the problems caused by it onto ourselves and that psychological trauma can be much worse to heal and treat than adhd itself, particularly I think the adhd diagnosis should be done as soon as possible so you can learn how to deal with adhd earlier in your life, I don’t think people should get to adulthood without knowing that they have adhd and how to deal with it and wish someday this becomes a reality.

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#16

I let this effect me too much. Since the appointment I’ve been questioning things and feeling like maybe I didn’t belong and that the diagnosis was wrong. I stopped my medications and have been staying away from the forums. And it didn’t work out. I had to remind myself of what people said here. She isn’t an expert. She doesn’t know all the details. A provider with knowledge and knowledge of me made the diagnosis and it was made based on things I shared. The diagnosis makes sense. It explains a lot. The more I’ve learned the more I know I belong. It’s just been a rough few days to get back to that place of understanding. I appreciate all the insight from people here!

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#17

From your description of the conversation with your therapist I was getting much stronger vibes of “I have no idea how to address adult ADHD” than “I disagree with your diagnosis”. When she’s had a bit to digest she may respond more helpfully, but if not an additional coach may be the best option.

I also really like my psychologist, but she’s also seemed much more confounded by the ADHD symptoms than the depression/anxiety side and that’s been a challenge.

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#18

Hang in there bud!

And understand that nearly everyone officially and unofficially diagnosed, both experience long and short phases of doubt that they even have that disorder, sometimes even without others doubting it.

My point is, feeling like this about your diagnoses, is normal.

Like you have just mentioned, it’s important to try and remind yourself of the facts surrounding your diagnoses and how regardless of what others say, if ADHD treatment is working for you, then it really doesn’t matter ‘how far on the spectrum’ you may think you are, because you’re getting results.

At least this is some of the positive self talk that helps me when doubt starts to cause me to spiral. ~ :slightly_smiling_face:

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#19

I live in the UK. The psychiatrist said I achieved far below my potential. If I had treated ADHD , I was told I would have got a high 2:1 or a 1st class degree, could have done a PhD .

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#20

This was exactly what I needed to read right now. I’m pending results of an eval that will hopefully and most likely reveal that ADHD has been at the root of my perceived failure to live up to my potential. I’ve been very confused about how to think and feel about it all, especially regarding diagnosis and the potential of medication. You sound like you once felt much the same as I do now, so I look to this story as a source of hope for myself.

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