ADHD--lack of insight, understanding, and support

I have found over time after being diagnosed with ADHD, and being treated somewhat successfully for it for around two years now--that I no longer connect with most people who have ADHD.

I think it's because most people with ADHD are not being successfully treated, and have a complete lack of insight into their negative behaviors and thought processes. Often I find that they aren't even aware of what is going on around them. Sometimes I get that way, but very seldom these days. I find that I am now sensitive to discussing the topic of ADHD with other "ADHD-ers" as well, as I find they often don't listen very well in support groups and don't contribute anything useful. I hope no one takes offense at this, as none is meant. I don't feel superior in any way, but rather-- sad that I cannot connect to other ADHD diagnosed adults and I would like to have their support and learn from them, and to also to help them from what I know as I am a fellow sufferer.

However, as evidenced by the lack of activity on this board and elsewhere in life, there isn't much transaction of ideas occurring about ADHD, and many random comments that constitute an entire subject. Most of the time I find questions about a specific medication only, or something from someone who thinks they have ADHD asking questions. I think that's great and all, but it's not enough to truly be a support group atmosphere, IMO.
I'm possibly not making sense right now because I didn't get any sleep last night.

Once again, these are just observations and are not meant in any insulting or arrogant way. I'm not even thinking along those lines.
Anyone else feel similarly?

If a person diagnosed with ADHD

Simcha,
I find now that I am on medication that I tend to forget what it was like without medication. I also find myself questioning if I REALLY have ADHD and if I should REALLY be taking medication for it or just accepting myself the way I am naturally.
For example I forgot to take my Adderall today and have really been walking around in a bit of a fog today. I can still work, but I've noticed several times today that I have floated off on people in mid conversation. I also wanted to take something with me to class with me today, took the time to find it, set it out in plain sight, and still left it behind. So one day off the medication and I've been reminded of what my days were like be for the Adderall. I definately work better ON medication than OFF, but ... is it really necessary? I can still function? I guess I will alway be reassessing these questions. I think for me I had reached a point where my life was totally out of balance and I could no longer cope with life AND ADHD. Now that I have gotten my life a bit more in balance issues associated with ADHD are a bit more manageable.

As for no longer connecting with other ADHD sufferers, I'm not to that point yet. I do find myself observing other peoples' behavior and wondering about it. I don't think I have become intolerable of other sufferers. I think I am a bit more sensative about random comments about ADHD or the person who the minute they struggle with something immediately want to Dx themselves with ADHD. I think everyone can struggle with attention problems, disorganization, forgetfulness, hyperactivity, floating off etc... I just struggle with where to draw the line.

I have heard that one symptom of ADHD is impatience with others. That was something my PNP asked me about when she was giving me diagnostic tests for ADHD. Simcha, it sounds like you are kind of impatient/intolerant with others with ADHD. Maybe that's just one of your symptoms! Ha, probably not, but thought I'd throw that out. I actually feel more tolerant of people with ADHD symptoms since I share some of those than if I did not have them. I can relate.

My thoughts are very similar to chaotic's. I'm actually not sure I have ADHD although I have a lot of the symptoms. I'm not too hung up on whether I actually have it or not. Is having a condition the same or different than having a lot of the symptoms? It's kind of a philiosophical question. Whether I have it or not, I think the behavioral modifications that help people with ADHD can help me too. And the medications that help people with ADHD can help me too. Whether I truly need the behavior modifications and the meds is not something I am convinced of. I can get by in life without them, I believe. But they can make my life easier, more productive, less chaotic, etc. I've been given Wellbutrin for ADHD and it has helped me in a number of ways, some of which I'm not sure have anything to do with ADHD. Recently I added Vyvanse, my first go at a stimulant, and so far this has been really helpful too. But whether I have ADHD or not, I don't know. I just know I am more functional now. I have a lot of responsibilities in life, and these drugs help me handle those. I have been overwhelmed the last few years with the stuff life has thrown at me, and maybe in a less trying time, I won't need the drugs, and will be able to cope better drug-free.

My therapist told me about a local ADHD support group run by another therapist who specializes in adult ADHD. I don't plan to join, but I think that he would have lots of experience with people with ADHD and would help keep the discussion on track so that it would be useful for the attendees, and help those who need it improve their listening skills.

What sorts of topics related to ADHD would you like to see discussed here? Can you start some threads on those topics? I would be interested.

Simcha,
Have you been to this site? http://www.addforums.com ? I have found it to be helpful. I would say more but I'm REALLY tired at the moment. If you haven't given up on connecting with other ADHDers I would love to chat with you at some other time.

It's too bad you feel that way Simcha. I've actually found the opposite: recently I was on a trip with a friend of my sister's who fits the very definition of ADHD. She's a lot of fun to be around, but she would do these things that totally perplexed and angered my sister. It didn't bother me much though, because I understood a bit more where she was coming from. And I could see that- like a lot of ADDers- she wasn't aware of the effects her actions were having. Maybe that view will change after a few years, but right now I feel a bit more compassion.

No I haven't been to that site, but I bookmarked it. It looks interesting so thanks for the link

I wouldn't say I've given up on connecting with other ADHDers, but I suppose I must wait until I find more ADHDers who are actually getting treatment and have more self awareness and awareness of the world around them. I know there are some on this site (probably you even), but my lack of patience in this area makes it difficult to visit this support forum, as I find I'm often disappointed.

I too need to sleep!

The point of my post wasn't to encourage more topics, but rather to express my emotion regarding how I felt about the lack of support for ADHD (especially adults). I'm not into the support group thing as as psychotherapy group for ADHD adults, as I don't see it as being beneficial to me. Maybe some people it would be beneficial to, but especially considering the one that runs locally where I live (sporadically though) most of the time does not have a moderator (and usually doesn't have one trained in psychology at all) thus, there is no point to such a group.

Why did you have to say that I have impatience with others with ADHD? Based on one post where I expressed dissatisfaction with so-called ADHD support and my absolute disgust with the lack of education on the matter?? I do not have impatience with other people in general, not even ADHD ones.

Your post is perfect for my example, my point, my lack of happiness with the way ADHD is discussed, treated, and supported-- you question whether or not you have ADHD, but I must ask you whether or not a person questions if they have MDD or Bipolar or Panic Disorder... ? No, not usually. SO why do it with ADHD? You trust your PNP enough to prescribe meds that you take for ADHD and other disorders, but you question the diagnostic accuracy of your ADHD diagnostic "label"? -----WHY? Do you question whether or not ADHD exists too? I'm just curious as there are many people who do the same thing.

Why Wellbutrin for ADHD? This is a part of the problem right here--- healthcare professionals prescribing Wellbutrin and other "Off-Label" drugs for first line treatment of ADHD. Wellbutrin like all other anti-depressants are not FDA approved for treatment of ADHD. Why do people question with ADHD flounder? Because the "professionals" who treat ADHD have no idea what they are doing and need to pull their heads out of their collective arses, no offense meant (just expressing my disgust with the way ADHD is "managed" in the medical community).

Do you want to know the diagnostic criteria for ADHD? What about your sub-type? I think everyone should know what their diagnosis is, subtype and all. Education is a part of the therapeutic process. Needless to say that I have not been myself the last week so I'm probably not expressing myself appropriately here. I'm happy that you find it an important topic---since I am not the only member here maybe you could post a ADHD topic or query instead of me?

Fitting the definition of ADHD according to you, or was she diagnosed with ADHD? Other people cannot diagnose ADHD other than a licensed health professional.

ADHD is NOT a disorder that ONLY expresses itself externally as some sort of a behavioral disorder that "bothers" other people.

Imagine what it is like to not be understood by others, or to express yourself, your thoughts, your emotions--to your peers or other people in general? Do you know what it is like to have your thoughts going at the speed of light, so fast and ahead of the subject at hand that they cannot be expressed coherently? Can you sleep at night, or does the inability to turn your mind off prevent you from doing so as it does with ADHD?

I'm happy you feel compassion, but are you implying that by my statement I somehow DON'T feel compassion? I sincerely hope you aren't because that would be not only caustic, but inaccurate at best.

Do you question if you really have whatever your other diagnosis are too, or just ADHD? I am not of the opinion that medication should be the only treatment for ADHD, nor do I find it necessary in all cases of ADHD; however, I do think that some mitigating measures should be used, preferably therapy with a psychologist or other specialist who has experience and skill in adult ADHD. Because of the lack of insight, someone to monitor progress is a good idea, IMO.

Chaotic--finally someone who makes some sense to me.

If the symptoms of ADHD interfere with your life in a negative way, then I would definitely say it is worthwhile to seek treatment to mitigate the negative symptomatology. Can you still function without the medication? OF COURSE! You can function until you encounter something that your life's demands outpace what you can handle effectively. Does taking medication bother you? I don't like to take mine, as I feel a slave to it at times (if that makes sense), but I realize that 9 out of 10 times it is more helpful than not. I'm thinking of switching my meds to something else though to see if it works better.

Do you talk to your T about your ADHD related issues as well?

I am not intolerable of other people, and if it came off that way it was not intended. I have lost some of my patience and I find I am much I do not connect with most people with ADHD that I have ever met in my life, but then again most of them ARE NOT TREATED for their ADHD and remind me of people spinning in figure eights, fruitlessly.

I too am pretty sensitive as well to the random comments about ADHD or the self-labelers who encounter hardship in a certain area and dx themselves with ADHD. If you notice this type of person, they almost never are serious enough to seek out a therapist to see if they actually have a disorder, be it ADHD or something else; they are often more interested in labeling themselves with it than really doing something about their problems. That in itself is frustrating enough.

Off to bed with me.

OK,
So... how about we all share some insights on how ADHD sufferers can improve their self awareness and awareness of the world around them?

What special challenges does ADHD present, that might make self awareness and awareness of the world more difficult?

I don't know about worldly awareness but I can comment on self awareness. When my symptoms get stirred up either by lack of medication or by escalating life stressors, I tend to miss some of the early warning signs that things are getting out of balance. When I do finally catch on, I have a lot bigger mess to clean up.

Is this the type of stuff you were wanting talk about?

Just to answer your questions...

NO, and I am not totally sure why I seem to have a different view of this condition compared to some other chronic conditions. I think much of my questioning comes from the the fact that a) there is no definitive test for it, b) compared to many sufferers I would say that my condition is towards the milder end of the spectrum, c) when I am on medication or not engaged in higher order thinking my symptoms are much more subtle, d) because it is a cognitive/mental health condition I don't like admitting that I have it.

No, my T put me on track to getting medication. Since then we have talked very little about the ADHD. At this point... I have no idea why I'm continuing to go to therapy.. but that is another issue. :-)

Whoops, I misunderstood. I thought you wanted to see more support and discussion here (on PC) on ADHD.

I'm sorry, I was making a joke. Obviously, it fell flat. Forget I said it--wasn't meant to be an attack.

Yes, I feel that way about many diagnoses and labels. Don't make assumptions that I single out this view for ADHD. In many cases, I believe in treating the symptoms (or in some instances, going beneath the symptoms and treating the causes) rather than getting hung up in the diagnosis. This is not a novel view, although I realize it is not universal. I am content to let there be a diversity of viewpoints on the value of diagnoses/labels. Plus, I am a very questioning person, so of course I would question the way I am. Questioning, IMO, is not a bad thing.

No, I don't. I have never received a diagnosis/label (for these symptoms) nor asked for one. I am not hung up on that sort of thing. To me, if the treatment helps, that's what counts. I'm not questioning any diagnostic accuracy. You seem to be trying to put a lot of words in my mouth, and I'm not sure why.

My PNP prescribes meds for some of my ADHD-like symptoms but nothing else.

No. Do you? Your questions seem strange to me, Simcha, again, as if you are trying to attribute beliefs to me that are not mine.

Wellbutrin is frequently prescribed off label for ADHD-like symptoms (so this was not just my PNP pulling a random prescription out of a hat). If it helps, then great. If it doesn't, there are other things to try. Since I have a lot of experience in the pharmaceutical industry, I know that prescribing off label is VERY common, and not just for psychoactive drugs. All sorts of drugs. It has to do with the drug approval process. It would be way too time consuming and expensive to go back and do major clinical trials for each new indication. If you think drugs are expensive now, just watch if there had to be major trials for each new indication once a drug was approved. No one would be able to afford meds! My PNP proposed several strategies when we first began seeing each other, and Wellbutrin was what we agreed to try first (as well as behavioral modifications). Why are you so threatened by that? You don't know my particular symptoms, so how could you judge that Wellbutrin was not a good fit? Some people like to sit passively in their doctor's office, say or question nothing, and blindly do whatever the doc recommends, but I am not like that. I prefer the team approach to medical care, and both my GP and PNP have the same philosophy (or I probably wouldn't be with them). I really appreciate that my PNP considers my input and what am I looking for when making her treatment recommendations, as well as looking at my whole person. I appreciate that just because she sees some ADHD-like symptoms in me, she doesn't automatically put me in the "ADHD" column of a table, read across to the "treatment" column and automatically prescribe Ritalin (or whatever). I have a friend whose son has ADHD and unfortunately, his doctor followed this one size fits all Ritalin approach to ADHD treatment. It did not work well for this boy, and there was no follow-up or discussion of alternatives (they got medical treatment through an HMO). He barely managed to graduate high school recently and now is struggling at his halftime job in a fast food restaurant. He will not consider treatment alternatives because of his bad experience with Ritalin and the doctor's attitude. I encouraged my friend to get her son in to see someone like my PNP, who looks at the whole person and who is experienced at prescribing more of a diversity of meds, but her son is now dead set against any meds, and my friend is reluctant to go outside her HMO for better care.

If you feel that way, then by all means get your diagnosis for yourself. Not all of us are hung up on that type of thing. I seek help for my problems and symptoms, not a slew of labels to append after my name. My treatments are helping me, and isn't that what's important? You be your way. I'll be mine.

Hey, I believe that too. Yay, common ground!

I have started a number of threads in the ADHD forum. I post a thread when I have a novel topic I want to discuss or get feedback on. A number of people start threads here, Simcha, you haven't been the only one by any means. Your responses to my post feel hostile to me, so now I'm not sure I would want to start any threads here anyway. I might get more of the same sort of response from you. It really feels like you are trying to deliberately misunderstand my post and attribute all sorts of things to me that I never said or meant. It feels like you "have it in for me."

Thanks for your candidness.
There isn't a definitive test for any mental health disorder, as with many conditions that negatively affect health in the total sense of the word. There isn't a diagnostic test (diagnostic in the same manner that we test blood samples for elevated TSH or T4 or glucose levels for instance) for Alzheimers either, but Alzhimers is heavily studied and definitely exists.

You make a good point about the spectrum of continuity regarding how and under what conditions the disorder(s) affect you. Everyone manifests symptoms in different ways, along with different severity levels. It makes it difficult to generalize I suppose. Personally, I don't like having to contend with stigmatization on a daily basis, so I don't usually discuss with other people that I have a so-called "mental disorder"... but then again, I don't share with other people that I have asthma either (barring certain circumstances). I also don't like to feel impaired compared to the non-affected population. I feel on less equal ground than they are, and it takes more effort on the same tasks than it does for a non-affected person.

I'm glad though that you get some benefit from whatever medication you take for your ADHD symptoms. I don't like the feeling I get sometimes when the medication wears off, and sometimes it makes me irritated, alongside other effects as it wears off. Fortunately, it usually works well when I'm on it. Your probably in therapy still because you get benefit out of it. ADHD is usually comorbid in adults that go untreated throughout their childhood, who discover they have ADHD as an adult (or those kids who didn't get the right treatment but knew they had ADHD). ADHD brings with it a lot of depression and anxiety alongside low self esteem that needs to be worked with, and while your on the medication and in therapy, the medication enables you to retain what you learn and fully contribute in a meaningful way to therapy. Sometimes I know I get things out of therapy, even though I might not be able to recount exactly how it was therapeutic or sometimes even what we discussed. Thanks.

I'm sorry, I didn't know you were making a joke. I wasn't trying to be an *** either but apparently I failed in that regard.

Sorry. I need to be kicked in the arse I think.

I'm not like that either. Everyone should take control of their healthcare, and be more proactive about it, but most don't for whatever reason. I do believe that proper diagnosis (treated properly) leads to better care--usually. I just have to wonder why your PNP didn't use the first line treatment-stimulants-, and instead moved to an anti-depressant that might not deal with the ADHD symptoms as effectively as the stimulants would? There is also Strattera, which is a non-stimulant. Unless you didn't want a stimulant for some reason or couldn't take them for medical reasons perhaps. However, if the Wellbutrin works well for you, I say stick with it. I'm in no way whatsoever criticizing your PNP or your decision to take Wellbutrin since it alleviates your negative symptoms. I work in a team approach also, with my GP and my psychologist.

I hate authoritarian physicians who don't collaborate or consider ALL of the treatment options. When the Ritalin didn't work well, he should have gone back to his doctor and discussed other treatment options (including a detailed discussion of what side effects the Ritalin had), and why the Ritalin didn't work well for him. I don't take Ritalin myself, but the tremendous push for Ritalin over other stimulants and non-stimulants for ADHD treatment is due to the massive advertising campaigning on the part of the pharmaceutical company who makes Ritalin (and it's long acting sister drug, Adderall). I think people are taught from the time they are a child that doctors are the authority, and do not question the almighty authority figure. They also erroneously think that a DOCTOR means they are some sort of a genius who knows more than you do, and whose time is more valuable than you getting more than cursory office visits that last 15-20 minutes. I get pretty good care by using my GP with my psychologist.

No, I don't have it out for you and I didn't mean to sound like I was aiming hostility at you (or anyone). I wasn't asking other people to start threads here though. I was expressing my frustration at the world at large concerning ADHD, not just here. Ironically, in relaying your story about the two people you know with ADHD who gave up on getting proper treatment for ADHD--because they didn't receive proper treatment from the get go, you've touched on something that I've said time and again about how a lot of people just give up after their first experience--which didn't effectively treat their ADHD because the doctor had no idea how to effectively treat ADHD in adults (or sometimes, sadly, any mental disorder). This includes psychiatrists, who in my experience aren't very educated about ADHD in adults.

I hope you accept my apology for sounding like an ***, as it was unintended.