Emotional Torment Over Seeking a Real Diagnosis

[munchkin]

I found this site recently and I am blown away by how much is resonates with my experience. I took the test and had every single symptom, and have had since childhood with tragic results. So this should be wonderful, and I should be able to finally get a real diagnosis and be able to take medication which will make my exhaustive efforts to work around and minimize the symptoms actually start to bear fruit – instead of being at this wall where I toil and work so hard not to disappoint, and yet still drive everyone crazy and get criticized and am seen as having poor character. Simple right?

Problems: My family and close friends have heard it all before, and how can I put them through another disappointment if this doesn’t help, and maybe even hurts? Doctors just seem to take my word for anything and prescribe whatever, just based on my own self assessment. They don’t want to challenge me, or do a real diagnosis – what if I’m full of it – isn’t it their job to ferret out the truth? Also, I feel that an ADHD doc will be motivated to diagnose ADHD… I have already gone on the wrong meds before and had horrible ordeals weaning off of them, with my family going along for the ride. I am in limbo right now – it seems so important to find out whether or not I truly have ADHD, and I can’t seem to just forget about it and continue on as-is. On the other hand, if this doesn’t work out for the best, I feel it will just be one more humiliation – that I am just looking for excuses, that I’m a super, super annoying hypochondriac who just wants attention. I don’t want to just go on meds without a very thorough diagnosis – then go through years before finding out it’s all wrong… arrrrgh! When your life is disfunctional despite every effort to “grow out of it” I guess you just have to keep trying to figure it out – no matter what anyone else thinks – but I’m finding it tough to hop onto yet another merry go round. Has anyone else been through this? How can I go forward – yet minimize the fallout that another diagnosis process would entail?

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[Anonymous]

yeah, it’s pretty classic to feel like you must be losing your marbles cos something is definately wrong, and to grasp at straws and feel exasperated over and over when whatever you think is your answer this week, turns out next week to not be it, then to feel that it must be in your head, and start the cycle all over again. i’ve been there. repeatedly.

have you thought about going to see someone like a well qualified, upto date, general practice psychiatrist or a psychologist whose background isn’t entirely focused on, but definately contains solid adult ADHD knowledge (eh, maybe even both- i’d do the psychologist first, cos they’re not so med-centric- i bet you can check on their specialisms online, or ask their secretary what they focus on- as an open ended question) and *not* telling them what you think you may have. instead you could just say that you feel that you’re struggling, and have been for as long as you can remember, and that you’d like to see what they think- and ask them to give you a thorough checkup/onceover/general asessment (wait to see what they cover during their assessment- they’d do a history to start with, which’d likely bring up issues, past diagnosises, etc, then i’d expect them to test your IQ, working memory, verbal skills, etc)?

then if they come up with a result of ADHD, it’s not due to your prompting or steering them that way- it’d be down to what the test results and history point towards (you can’t really cheat those sorta tests without a lot of practice!)…. and if they don’t, *then* you can suggest it as something thats been stuck in the back of your head for a while as a possible, and ask them to consider it as an option, and rule it out/tell you why it doesn’t fit- again, putting the onus on your results.

be honest with them about your concerns (that you feel you might be a hypochondriac, and why, that you’ve been on meds- and what, and why, and how they affected you). if they start off working with cognitive behavioural therapy, any benefits you see from that will be really constructive whether you have adhd or not… (win:win!) if you get started with meds, you should expect to feel a change within a month or so (sooner from stimulants- non stimulants can be a bit more subtle and take more than a few days, but changes don’t take months to appear)- so it’d not need to be a huge drawn-out year long process any way that i can imagine…. and coming on and off ADHD meds after a few weeks isn’t like coming off say… long term effexor use (for me, that was way less than fun).

perhaps just don’t tell the friends and family what you’re doing and thinking is wrong, this time around. do they really *need* to know? why? or do you just feel the urge to share? in a way, you’d just be putting undue pressure on yourself and putting yourself in the spotlight by involving them at an early stage- it’s kinda like telling everyone about your upcoming driving test or possible pregnancy- if you give everyone the date, then they’re all psyched up, fussing and watching you, waiting for the news, and you have to deal with telling them the bad news if you fail/turn out to not be expecting, and the accompanying comedown- instead of going through that fuss, you can always tell them that you took the test after you’ve already passed/it’s for sure happening, and share just the celebrations.

if you need to share *something* for some reason beyond your blurty mouth and desperate lack of impulse control (welcome to my world! ) you could always just tell them that you’re going to be making some lifestyle changes, and to be aware, and let you know when/if they notice any difference in your behaviour over the next few weeks. or you could ask them to reflect on any possible perceived changes retrospectively, after you’ve started on a treatment strategy- if you can manage to keep your mouth closed for that long (i’d fail epically, but trying is worth it!).

personally, i’ve always been oddly private about stuff that really matters, when it comes to sharing with my family and friends (though in classic ADHD style i’ll blabber way too much information in graphic detail at people who don’t matter to me- strangers on the bus, etc – i know, i know! ) . with family, i want to spare them the upheaval, and myself the natural influx of wellmeaning advice and opinions from people whom i respect and trust, and accordingly might not entirely appreciate total frankness from- cos it’d hurt more if it turned out that what they had to say wasn’t exactly what i wanted to hear…..

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[munchkin]

Thanks so much Jenetically – what I really needed to think about was the whole blabber thing. I have managed to research doctors and have an appointment for tomorrow – and haven’t bugged ANYONE about it (except you 😆 ) Seriously – I can think of at least 3-4 interactions I’ve had in the last couple days where I normally would have spilled my guts all over people, but I made a conscious decision not to do that. So, now I have an appointment tomorrow – and I can picture how it would normally be – I would have bugged everyone around me, I would have been going over and over in my mind about what I said to them and how inappropriate it was to do that, and would be a nervous wreck. Now I just feel anticipation, slightly emotional, but generally having a decent evening, doing my normal routine. I think my husband overheard me making the appt, but I did go in another room behind closed doors to do it. He hasn’t said a thing, and neither have I, and it’s all kosher. It’s like, I’ve done the same pattern so many times, I don’t even see it anymore. I think I even blame other people for not being understanding or supportive, when really the drama was just a bit self created. I feel better right now because I don’t need their support because I’m OK. Wish me luck 🙄

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[Anonymous]

good luck you really don’t need it though- however it turns out, you’ll get through it just fine. have faith in yourself!

you should be really proud of yourself for making such a big effort, and managing to keep it zipped. i’m impressed- thats a major undertaking!

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[munchkin]

Thanks – it really did help things that I didn’t do the whole blab thing. So – now I think I may have picked the wrong doc, although he was a super nice guy. I didn’t feel he asked the right questions, and he started getting into this whole thing about me being a rebellious person, and that I should pursue the Thyroid angle (even though I had explained that I had done that, with no improvement with my attention symptoms…) No assessment was done, or discussed, even though that’s what I requested in our initial phone call. Yet… I made another appointment, and now I’m trying to decide whether to keep it, or just move on and try someone else. So much for wanting a doc that isn’t swayed toward adult adhd. Now I’m thinking that’s the only kind that’s going to “get it.” I’m feeling lost…

If anyone has any insight into why or why not to continue with this doc, I would be very interested. Thanks!

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[Anonymous]

If you’re having serious doubts, find a new doc!

I can relate to your frustration:

Several years ago, I went into a depression after experiencing being a “failure” in college (a lot of it due to undiagnosed ADD). No in my family, nor my best friend believed I was depressed, except my counselor, and I lucked out with a good doctor. (Neither of them believed I had ADD, either, adding to the sting.) However, two counselors that I had seen in treatment for the depression, immediately dismissed my interest in getting any information about ADD and possible diagnosis. The first said he “could just tell that I didn’t have it”, while the second wouldn’t even consider it unless I could find my kindergarten records. I was defeated by their ludicrous diagnostic methods and being that I have add, not surprisingly put off searching for those records. 3 years later and I find out they’re destroyed. Honestly, ADD&Loving It?! convinced me to try again. I was only diagnosed a few weeks ago by a psychologist, who asked thorough questions. He really took the time to investigate my answers further, and I’m glad I was placed with him.

However, he needed to refer me to a psychiatrist for the medication, and I she asked me the same questions but without the same interest. So, she leans on the cautious side of diagnosis, because she’s not “convinced” all the way. Of course, it takes time to get a definite diagnosis, but from this whole experience, I realize that A lot of doctors (my psychiatrist) want to see clear cut symptoms right away, rather than observe and question the way a psychologist would to understand you. I have a couple of doubts about her, but I’ll determine whether to switch doctors after our second visit. It’s really hard to get a doctor you can connect with, who will want to help you. Be Vigilant! I waited years and I’m on the verge of flunking out of school, again, and after all this I’m determined to find a doctor I can connect with. It’s so hard when there’s so many myths about ADD, to get real help.

If your doctor’s not listening to you, seek a new one. I’ve had so many bad experiences with doctors of all types, but for something like this don’t give up until you get real answers/evaluation. Ask for a referral to a counselor or psychiatrist, who can diagnose ADD. My physician didn’t question my concerns, she sent me the referral (and gave me a thyroid blood test, which checked out fine). Good luck to you.

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[munchkin]

It was super hard to go looking for another doc. I gave up in frustration for a bit, but my hubby got on my case because he was so sure I didn’t really have ADD but decided I was going to be in a super bad mood until it was confirmed one way or the other. I got 2 referrals from our marriage counselor for “real” add knowledgable docs. Made first appt, found out my insurance wouldn’t pay, totally got upset, cancelled the appt, made the 2nd appt, and finally got through an assessment. (prolonged by an entire extra week due to leaving the filled out assessment questionaires sitting on my desk at work before driving 30 minutes to another town to get to that total waste of an appt)

Finally, yes, absolutely ADD, referral to Psychiatrist, prescription for meds, beginnings of results after about 6 wks on Concerta!!! Yes folks, there is a light at the end of the tunnel, but it was an emotional roller coaster for me due to how much my self esteem and marriage was riding on the outcome. I think the most difficult thing is not knowing how long the process will be, and therefore, it is so difficult to pace yourself emotionally and manage your expectations.

I am so relieved to be through that process and so grateful to have found a new direction for improvement that’s actually seeming to have results. I’m still so sceptical that somehow it will all just be some awful joke on me, and not make any difference in the end. I guess that’s just my past experience trying to drag me down. Seriously though, I have been able to function better in ways I am only just noticing. Things I didn’t even know I was screwing up, and now that they are happening better I realize – wow there’s another thing that was making things hard! (Like driving my car without people honking at me because my blinker was on for the last 20 miles – wow it’s so peaceful and I can enjoy the song on the radio) This story has only just begun… much more work to be done.

Good luck to all that are trying to get thru diagnosis – I hope you can get some progress in your life too DON’T GIVE UP!!

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[Anonymous]

Congrats, Munchkin. It’s hard to find another doc, let alone muster up the courage to do so. Hope to hear about how meds help you!

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[munchkin]

Thanks, meds are amazing, amazing effect on work, home, personal life already. It’s such a great feeling to start an activity with confidence that I can stay on it to completion. Still – just so confused about all the strange ways I was interpreting my problems over the years. I stopped my thyroid meds cold turkey when I ran out of refills and made myself sick. I’m still not sure if I ever needed them, but I’m back on them and will try to go off more slowly. Hopefully just a minor setback. My marriage is hanging by a thread, and I’m so sensitive about any criticism, and being told I’m playing the “ADD card.” There are some things I need to work on that will take time,and I’m impatient and past resentments get in the way of progress. Getting the diagnosis was so important though, and I have no regrets. I needed to know, and if I can just keep my emotions in check, I can make real progress – I’ve felt so stuck for so long. I’m so thankful to this site and community. It’s life changing. I hope lots more people who need it will find this I wonder on average how many doc’s people had to go to in order to get from start to finish in getting a diagnosis? I was expressing these issues to at least 7 docs before finding the right doc – #8 (referred by doc #7). It wasn’t until this site and knowing the right questions to ask that I finally started getting somewhere. Yay!

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[Anonymous]

When speaking with others not knowlegeable about ADD, it might be helpful to articulate how you would like to feel/behave. For example, when I filled out the questionnaire for the consultation with a sleep specialist, they asked “What would you like the clinic to do for you?” or some such question. I said “I would like to be able to fall asleep without difficulty at night, stay asleep for the whole night, wake up in the morning refreshed, and be alert throughout the day.” That’s normal.

When I had my jaw surgeries and my sister-in-law asked why I had them, I said “so I can open my mouth to eat without being in pain”. All of a sudden the jaw pain SHE was having made more sense to her and she was more compassionate about something that otherwise looked cosmetic (I had an overbite).

So perhaps you could word a statement in a similar way that isn’t confrontive, but allows people to know what your goal is in treating this. Of course, the jerks, you don’t have to respond to. But anyone else, you might, in a few words, just be giving them some information that may lead them to investigate something that “everyone complains about” (we know better!)

I’m getting diagnosed with narcolepsy 20 years after I first investigated it, can relate to the frustration. Glad you made it through all of it!

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[billd]

These posts remind me of what my regular doctor asked me when I said I was seeking diagnosis and treatment for ADHD:

“You’ve lived with this for over 50 years, why are you bothering to do anything about it now”.

I so wanted to slap him good. Imagine dealing with something for many years, believing it was “just you” and it was “normal for you, you are just that way” then finding all of them may be wrong, and there may be treatment? Painful jaw to chronic back pain to knees that won’t work, then suddenly finding someone who says “oh, yeah, we know what that is and we can deal with it”.

WOW, like you’ve been given hope and told that you aren’t “weird” or lazy after-all! (compared to “why bother with it now”)

Even among ADD people there are those with lesser severity, or different types (there are several types and combinations) there are those ADDers who just don’t “get it” when one of us has it REALLY REALLY bad, so bad, it’s ripping their lives apart. They have dealt with it, find something simple they can do to control it, and don’t understand why some of the rest of us struggle with it so. To me, they might as well not be classified ADD as theirs is totally different – as different as the people that have it.

Then to have it in combination with OTHER things, WHAM!

I’ve got a sleep issue, too. The heart doctor yesterday said he suspected narcolepsy……. others say no. I’m in-between on symptoms.

I’m wearing a heart monitor – so much stress and issues either caused by ADHD, or running in parallel with it, I’m feeling tight chest, arms and shoulder pains and tingly fingers for several days now. BP and a quick EKG showed all is good – but they aren’t really sure….

I think we’re all fine as long as you don’t tell me it’s a blessing and it can be a good thing at work. LOL – here, it can get you in huge trouble.

I’ve been at any given job only 7 years max……. and some for only 1 to 2 years.

Munchkin – I here ya:

>>I’m so sensitive about any criticism, and being told I’m playing the “ADD card.”<<

Yeah, I hear ya, loud and clear. Good luck – no one needs that, and from a spouse, it’s really hurtful. Virtual hugs from me.

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[munchkin]

Thanks Bill – hugs to you too – scary stuff when you’re dealing with a heart problem. I’ve had such bad insomnia all my life and I know how hard it can be with sleep issues. I love who I am, so if anyone can see ADD as a blessing, I’m happy for them, but I do get it about what a liability it can be – I’ve been successful at times when my strengths were valued, and at other times, lived in my car. No matter what, I’m glad to have confirmed what I always knew – I’m not lazy – I’m different and if people can just back off and let me find my way, I can accomplish all the same things – and maybe more! Ha!

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[Anonymous]

munchkin, you’re on meds now, right? has it had any impact on your sleep?

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[Robbo]

Wow!

talk about a lucky click! I’m getting more n more lucky as I search this site for Jems [truffles].

I’ve been writing, reading, listening to tunes, watchen a little bit u TV, and eating some excellent good Italian food I made from scratch. Nebber had it so good.

And now I’ve found this thread. Shoot man my life is a piece of cake compared to the hell some of you guys have gone through just to get where you are now.

You guys write so well too. In fact the writing quality on this site has made me work harder to sharpen my own skills. I can’t begin to talk about how lucky we are here now, in 2012 to have so much awareness and even a growing number of doctors understanding that this ADHD thing is real, and treatable. All we gotta do is be straight shooters, tell the truth, and represent ourselves as being worth treating. Like it or not this planet is becoming much more of a “survival of the fittest” environment than I want to believe it is. I’m willing to accept that fact, but still. Unfairness and injustice is never an easy pill to swallow. ADHD gave us the determination and FIGHT! to get this far, now that our heads are semi above water, it’s time to help the rest of the up and coming survivors make it to shore. My belly is so stuffed with pasta, home made red sauce, hot italian sausage, and a little bread, that I’m afraid I might pop if I don’t do lay down n take it easy. At least I’ve got a dang appetite for a change… Hallelujah

More later.

Now playing : Angry Chair Alice In Chains MTV Unplugged -AND then- A Passage To Bangkok Rush 2112

1:45 am pst Fri. 2/17/12

totallyadd Gold

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[Robbo]

I lived in my car for a while too Munchin, It’s amazing looking back at my life. I don’t know if it’s the ADHD, of because of the ADHD. But we develop very strong survival skills. Then again, the folks that are not here, the ones in the hospitals, prisons, and dead. They don’t get a chance to talk about how horribly this problem eats away at our economy, our culture, and heck I wonder how many wars were started by Impulsive criminally insane untreated ADHD people?

Just sayen…

It gets on my nerves when people say “Just sayen” I think I did that just because it’s sorta funny in quirky but creepy way. I guess I’m a little creeped out by the impending doom that hides deep inside our fear full brains.

Real DOOM really is Impending… I’ve trying not to watch the news so much lately. TV is becoming very poisonous. But we do care about the world. That’s what’s so cool about this web site. People become contributing members of a growing culture of wellness here.

Compassion and love are abundant resources here. Ya just gotta dig around a little for the truffles, like this page.

Now playin : In My Time Of Dying Led Zeppelin Led Zeppelin [Disc 3]

sat 3:52 pm 2/18/12

PS while reading this again, I remembered being in the hospital 15 years ago, about 2 weeks after the accident that left me paralyzed. I WAS RELIEVED!!! no more struggling, now I didn’t have to work jobs that eventually got boring and left me feeling lonely, rejected, and living failure… Not just feeling failure. Living it. I was the class clown at the spinal cord injury unit, I had an excuse to get off the crazy train… It’s so hard to put into words. I won’t even try. Lot’s of you guys can feel what I feel.

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