I feel like I don’t exist. - CHADD's Adult ADH...

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I feel like I don’t exist.

47 Replies

I live in a very isolated area and I have no friends. I have ADHD and some autism. My doctor treats me for bipolar disorder which I don’t have and swaps one seratonin medication for another because they don’t work. I was misdiagnosed 25 years ago and nothing has worked. I’m uttterly hopeless and live in a bottom level hopelessness every day. Suicide thoughts are a form of hopelesness which is quite obsessive in my mind at this point. No one listens to me. No one sees me. I don’t exist. The mental health system in my area is broken and my doctor laughs at it and made a joke about it when I told him that the doctor in the ER had told me that.

47 Replies

Well, one of the things you said doesn't have to be true because we're friends now if you'd like to be. I'm stuck in the doldrums of day drinkers and confused tourists in my area (I moved to SWFL 4 yrs ago from Mass), so I can empathize there. I just got diagnosed with adhd and my neuropsych asked me if I'd ever been diagnosed with a learning disability. I said no. I'm having so much trouble in college now, though, twenty years later than I should have gone, even though now is as good a time to go as any with the way the world is changing. Everyday is a new adventure, and I try to remind myself that it's my choice how I respond and how I feel. I have to actively force myself to see the bright side often. I hope you have a better day ahead today. You'll be in my thoughts :)

P.S. some doctors can be assholes. Come to swfl where there are no teaching hospitals and they can be incompetent on top of assholes... shaking my head. I wish I could give you a hug now. I've been through 5 primary care docs down here. It's a tragedy what passes for the medical community in some places. I have an appointment with my currently tolerable primary care/gp in a half hour so I gotta go. You're in my thoughts. You'd better have a good day! I'm checking up with you again later :) *Hugs*

Bynddrvn profile image
Bynddrvn in reply to

OMG are you not kidding. I live in a rural area and my primary care physician left the state. The new doctor is an idiot and has made multiple incorrect statements about ADHD. I checked her out and she got her medical degree from a for profit college based in the Caribbean? Not sure how that qualifies you to practice medicine in the USA.

I don’t have adequate healthcare in my area and I don’t know where to turn. I wish I could say every day is a new adventure but the nest day is just like the last one. I have no motivation and I can’t focus on anything at all. I have no idea where to turn for help.

in reply to

I completely hear you about adequate healthcare. My GP/primary care doctor, who I just saw and thought was tolerable, just lied to me about a mathematical error he made about a dosage, so I'm back on the hunt for a new primary care doc. 6th time is the charm, right? The incompetence is just raging down here, but I cannot abide unethical behavior.

When I say adventure, I mean that in the sense that everything is harder before it gets better. Like a movie where you're the protagonist and you're fighting an uphill battle. An uphill battle today is an anthill battle tomorrow. *Hugs*

in reply to

Hugs to you too, but I don’t really think I’m going to be around for to much longer. Good luck. I don’t have the stamina anymore

Thank you Icebear. I have tears running out of my eyes because you responded to me.

in reply to

Awww, there are so many kind and knowledgeable people in this forum that you'll never be short of good company here. I've only been here two or three days and have already spoken to some of the most remarkable people I've ever met and they're all going through the same things you and I are right now. If you ever feel like you'll do something impulsive like hurt yourself on purpose, make a promise to us that you'll call 9-1-1. Just because you have feelings like that, it doesn't mean you're obligated to act on them. Feelings and emotions are so complex sometimes that you have to stop everything and 1) sort them out, 2) question them, and 3) argue and rationalize them like you're your own defense attorney. For every one bad thing you think you've said or done, gather evidence from us about how we've done those same things and said those same things. Heck, gather evidence from the general human condition about how inappropriately some of humankind has behaved. It's how you go on from that point that really matters. Keep moving forward. *Hugs*

KarenADHDWeekly profile image
KarenADHDWeeklyPartner

Hello Ellapony,

I am concerned the possibility of suicide is something you have considered. ADHD is hard and being misdiagnosed makes things more difficult, I understand! I'm glad you've reached out for support on our message board.

I'd like you to also reach out to the National Suicide Prevention Lifeline. Please call them at 1-800-273-8255 . They have people waiting right now to talk with you!

If you don't want to talk on the phone, text the Crisis Text Line at 741741. In 5 minutes or less they will start texting back with you.

I know your doctor hasn't been helpful, but don't give up! Find a new doctor if you need to. Check out these links for suggestions:

chadd.org/support/directory...

psychologytoday.com/us/ther...

You are important and showed strength and courage to share this on our board. Give the Lifeline a call and they can help you.

*hugs*

Karen

CHADD/NRC Health Information Specialist

Thank you. I’m at the end of the rope, literally, I live in the woods and there are lot of big trees here and the only thing I’ve figured out to end it And not harm anyone or anything else is hanging myself

Coach4ADD profile image
Coach4ADD

Please call 911 or the suicide hotline! They can help! Don’t trust your feelings..call for help.

in reply to Coach4ADD

I agree. Feelings are fleeting and are highly unreliable when you're feeling down. You have to actively turn the ship around yourself. There's evidence behind fake it til you make it and putting on a smile. These little things that may feel silly actually begin to change your attitude and sometimes your physiology, too. When you start spending more time and effort visualizing the happiness and the outcomes you want instead of the things you perceive are wrong or worthless, you'll start to default toward happiness and purposeful productivity. I sometimes have to start at square 1 of this process everyday, and that's no big deal over time. I just tell myself, "Ah, yeah, things are a pain in the @ss (I have to stop swearing; I forget how I am until I see it written here lmao) right now, but I'm turning this dang ship around any way I can."

meerskat profile image
meerskat

Sometimes you got to put your foot down and lower the boom on your doctors. Let them know how you feel about their service. Make them pay attention to you. Tell them you are going to contact The Mental Health Services about your concerns. You got to get mad (controlled confidence). Be your own advocate and start researching your conditions and the meds you need. Always ask your Heavenly Father to guide you. Remember they don't know it all.

in reply to meerskat

Too right!

Codebox42 profile image
Codebox42

I feel this really speaks to me and honestly I've been feeling the same way for 3 years now.

Last night I did get in touch with the suicide hotline they hooked me up with an ambulance which took me to a hospital in my county and ran a drug test, of God knows how many drugs, half of I’ve never heard of. Then they told me that the hospital nor my county had a mental ward and threw me out in the freezing night 30F. I was 40 miles away from home.

I did however get to talk to two women that listened to me extensively and a very nice case worker came to my house today. Unfortunately I was waiting on my phone to talk to the nurse practitioner in another clinic and the next county over. The case worker had to go but she is coming back tomorrow.

The nurse practitioner at my regular clinic really wanted to help me but was loarded over the old freaking geezer doctor with all his authority which recommended yet another seratonin medication, the one number 35 or 55! Although I cotested him and and also told him please not to turn my condition into some ‘hey! I’m your old uncle kinda joke’ which is his habit, I accepted the medication. I just get tired and defeated with these people. When I came to my car and looked at the side effects, on the top of the list was the condition that I was there for.

1. Suicidal thought

2. Urge to act impulsively

I flipped out in anger, got to talk with his assistant and asked her if my doctor really WANTED me to kill myself and also told her to tell him that he’s stark mad. I do get do see the nurse practitioner in my county in few days. At least she is a woman who seems to be willing to listen and doesn’t live in antiquity and fragile authority she holds together with an iron fist and I hope she doesnt have some a**hole of that kind residing over her. I live on the northern edge of my county so I have used services in county north of me.

I thank you all here that have responded to me. Im very happy that I found you. Im sad that you have to deal with the same shit I do, it’s not fun but that’s how I found you all at least we have each other.

in reply to

Be kinder to yourself. We all have a profound love and respect for one another in this world as humans, so always remember share some of that from yourself to yourself *hugs*

HadEnuf profile image
HadEnuf in reply to

So basically, the idjit was prescribing exactly what it takes to worsen ADHD *and* prompt suicidal ideation?

Honestly, does anyone prescribing antidepressants ever read the “black box”?

Isn't the irony a little blatant?

(*facepalm*)

If I weren't so far away, I'd offer to come help you kick some arse.

sdraine profile image
sdraine

I found this two days ago. Please watch.

bigthink.com/videos/johann-...

sdraine profile image
sdraine

I felt the same way. I felt lost and dead inside

m.huffingtonpost.co.uk/rach...

house77 profile image
house77

Hi Ellapony,

I feel the same, I have no support too. And for a while I've been thinking of changing drs, as I feel he don't believe me, but all I've told him about is true as I had zrays done ,and am seeing a Aspergers theripist. Will be dignoize in march, she thinks I have some kind of Austism. As it in my family.

wishing you all the luck, change drs and ask for suppotr. Xx

unfocused profile image
unfocused

This might sound weird, but... do you have any way to save up some money and move? A doctor knowingly treating you for the wrong condition is unacceptable, and if that's all you can expect there (And I know what it's like, coming from a crappy small town where malpractice was the norm) then getting out might be the best thing you can do for yourself. I was in a similar position 13 years ago, and two suitcases and a one-way plane ticket saved my life.

in reply to unfocused

I am actually considering that option. But if I move to some city, I only have money to either live somewhere or eat for. Not both.

unfocused profile image
unfocused

I know that feeling. Maybe try putting a little away in a jar each week, for adding to moving funds or something else nice? Seeing a jar fill, little by little, can be really encouraging. I ate a lot of plain rice and slept on the floor for a long time in my little apartment, but I felt like the ruler of the world. You can do a lot with a little! If you feel you could get work in a new place quickly enough, try to put away enough for just a couple of months of expenses. It can be hard to scrape it together and take longer than you'd like, but it sounds like it might be the best way to put all these idiot 'doctors' behind you! Is there a city that sounds like a place you'd like?

I’m not sure, truth to tell.

Maybe a city with the best mental health care

Bynddrvn profile image
Bynddrvn

Doctors in rural areas just are not up to date on their medical information. Many are religious and not to be a dick but they should probably spend a bit more time reading medical journals than religious texts that have nothing to do with using good science.

My entire childhood I spend being poked and prodded but no one seemed to be able to figure out what was wrong. Ironically the word "inattentive" appears frequently but no one tested me for ADHD. When I got to college a doctor finally diagnosed me with ADHD - inattentive type and started me on Ritalin. It made such a difference in my life and I finally started moving ahead in the world.

During the financial crisis I lost my job and had to move back in with my parents. Finding doctors who would prescribe Ritalin is very difficult. My latest doctor insist that I get neurological testing even though my experts and studies have shown neurological testing by itself to be a poor indicator of ADHD symptoms. The neurological center insists that I do not have ADHD and said the diagnosis might have been appropriate as a child but now I don't have it. I was like, first off I wasn't diagnosed as a child and second - you apparently have no idea what you are talking about.

My doctor used the diagnosis to remove me from Ritalin and put me on Wellbutrin. My attention span is horrible and I am not getting things done. I don't know why doctors would do this to people.

Guess this is a really long winded version of saying, I understand where you are coming from.

in reply to Bynddrvn

Warning: I'm going to say something disturbing. Just so you know. I try to keep this kind of thing to myself.

Wellbutrin might work for some people but antidepressants make me suicidal. I don't know how many of us feel this way on them, but I've tried two in small doses (once at 13 and once at 33) and the same thing happened each time: I'm still distracted or maybe painting a wall in the livingroom or grouting a bathtub at 3am, only I'm in a GREAT mood doing it/being it... until the fourth day... when I want to drive off a bridge. I hate them. I fear them. I don't fear much, either, but F them. I've read how well so many with ADHD people do on them and I wish it were that way for me. But if it's not for you, either, then join the club because I absolutely hate antidepressants!

Bynddrvn profile image
Bynddrvn in reply to

Completely hate Wellbutrin, makes me into a zombie. I am not sad but I am not happy either. Not sure why some medical professionals still believe ADHD does not exist. Incompetent doctors should be unemployed, seriously who else could get away with doing such a bad job?

Halem1982 profile image
Halem1982 in reply to Bynddrvn

Wellbutrin made me efffing nuts. I was sleeping with a knife by my bed for no reason. I stopped that immediately.

cjnolet profile image
cjnolet in reply to Halem1982

ugh. I feel like my Topamax experience did that to me. I'm still apologizing to coworkers for accusing them of stuff....

Bynddrvn profile image
Bynddrvn in reply to Halem1982

Good timing, I just spoke with my aunt today. She is a registered Nurse with multiple certifications, and teaches nursing at one of the largest colleges in the USA for nursing. She said that it is not at all uncommon to have severe side effects from Wellbutrin, especially the generic form.

There is a new streamlined process used by the FDA where they do NOT test all the drugs and assume that if one dosage level is safe then higher dosages are also safe. Just absolutely nuts.

Halem1982 profile image
Halem1982 in reply to Bynddrvn

I feel like I’ve had bad experiences with a lot of psychiatric generic drugs. Mostly just not as effective as the name brand but others like Wellbutrin made me batshit crazy. Lol

HadEnuf profile image
HadEnuf in reply to

Bupropion (Wellbutrin) did work, somewhat, for me, but not as effectively anything *labeled* stimulant.

Ironically, the reason it's labeled “antidepressant” is that it works for some “atypical depression” that may be misdiagnosed, ADHD situational depression rather than a free-standing, depressive disorder. In fact, its mode of action—an SNRI, inhibiting norepinephrine reptake—may be the same as for methylphenidate (unlike unsubstituted amphetamine, which is thought to be a releasing agent, or caffeine, which is thought to be a receptor agonist).

I wouldn't touch an SSRI with a hundred-meter laser beam, let alone a ten-foot pole: when I wound up on a poorly-chosen medication (for a completely unrelated, metabolic condition) that I ultimately realized was raising my serotonin levels as a side effect (impotence that resolved when I ran out tipped me off), my ADHD became markedly worse, producing a continuous mental fog that cost me what had been a dream job.

Halem1982 profile image
Halem1982

Ugh, I felt so misunderstood by everyone for the longest time. Just like everyone else, I wanted friends and I wanted people to like me but I remember when I was younger always feeling like I was on the outside looking in at peer groups. I didn’t exactly fit in with any of them. And I haven’t really had any other recurring health issues so I can’t speak for the whole health system but I will say this.......the mental health system in the US is a joke. I’m in Houston, TX and we have one of the largest medical centers in the country, the damn thing looks like a downtown view at night because it’s that big, but I haven’t found a psychiatrist who knows much about ADHD medications. I’ve had to go to other states to see Dr.’s who get it and they’ve consulted with my current pill dispenser of a psychiatrist. Dear god, I hope he isn’t on here to read this comment but I seriously doubt he has time to do additional research on the mental disorders he treats. I’m happy I found Dr. Butcher, who is a psychologist who specializes in adult ADHD and he truly listens and seems to understand but I still need a good psychiatrist to help with meds. I actually didn’t find Dr. Butcher, he found me after I wrote a terrible review of his clinic based on my appt with the psychiatrist he leases office space to. What part of the country do you live in?

I live in Oregon. In the second least populated county in the state. I was misdiagnosed for 15 years with bipolar disorder and was constantly getting off my meds because they didn’t do anything for me except make me placid and fat. I was never overweight until I took seratonin meds. Now I can’t get the weight off. I always used to be 135-140 lb and now I weight over 200 pounds. It’s unhealthy and I also broke my ankle and tib/fib so I’m not as mobile I used to be.

I agree with you on the mental health system. Oregon ranks the lowest of all states in mental healthcare and my county is on the bottom. I’ve been trying to get some treatment for 2-3 years after the county closed the mental health care. In Oregon you can only get help in your county if you have the Oregon health care which I have. I was at the bottom of the very dark pit in the beginning of February and I couldn’t see any purpose in life. I had been severely depressed for months. I had been kicked out of a hospital because it was in the wrong county. I was kicked out of a hospital in my county because they didn’t have any psychiatric unit.

The weird thing is after the county closed the psychiatric service they still had the number to it open and I kept calling and leaving my number for them to call back. It’s still on the web. Of course no one called back. The mismanagement of funds in Oregon right now is staggering. I’ve spent tons of taxpayers money on dead ends because of that. So have other people in this state. So to make a long story short, there is a nonprofit that runs the psychiatric help now and has been since the county folded. I’ve been in their system all along but they never called to let me know that they were there.

I finally got a hospital in Portland to admit me and to my surprise it was the best psychiatric hospital I’ve been to. I was surprised it even existed. The doctor I saw there was very thoughtful and attentive and he told me I had sever symptoms of ADHD and couldn’t really see that I had bipolar disorder. I got in tough with the nonprofit and things started working from there. It’s very hard to get any doctors to rural areas like were I live so I see a psychiatrist via Skype but there is a psychiatric nurse practitioner at least that I see in person.

Halem1982 profile image
Halem1982 in reply to

Ugh, how frustrating! I’m sorry. My psychiatrist tried to tell me I was bipolar the last time I saw him and I was like “seriously, you’ve been seeing me for 9 years and you’re just now figuring this out?” That was sarcasm and I don’t believe it for a second. Yes, I might have seemed manic at the moment because my meds aren’t working and I see my world starting to fall apart like it did a few years ago the last time they stopped working. I’m freaking out right now and people keep telling me to relax. It’s draining. I don’t want to be on mood stabilizers or antidepressants in addition to my ADHD and anxiety meds. I feel like my depression is just situational and if I can make it through the stuff I’m dealing with, I’ll be fine. But hell, what do I know? Maybe I need to be on another type of drug🤦🏼‍♀️

HadEnuf profile image
HadEnuf in reply to Halem1982

What I find particularly troubling is that situational triggers are the single, most telling differential between ADHD (along with a host of other conditions like BPD, PTSD, ...) and bipolar or depressive disorders.

This has been known for a VERY long time; yet the conditions for which absence of a trigger is THE most significant differential are diagnosed CONSISTENTLY even when patients volunteer the trigger!

I realize no doctor can possibly know enough about all of their patients' conditions—this would be beyond any stretch of human capacity—but some of the common mistakes are simply mind-boggling in prevalence.

Halem1982 profile image
Halem1982 in reply to HadEnuf

Psychiatrists need to be specialists in specific disorders, in my opinion. They’re all blanket diagnosing pill dispensers for the most part.

HadEnuf profile image
HadEnuf in reply to Halem1982

Indeed, government intervention had reinforced that practice.

On feeling misunderstood, I’m totally with you there. Sometimes I feel like I’ve spent my whole life running in a parallel universe alongside everyone else in this world. I always knew something was wrong, but I could never put my finger on it. I started reading about ADHD after talking to the psychiatrist in Portland, it makes a lot of sense to me. The bipolar diagnoses never made sense to me, but I thought the doctors knew what they were doing but I was totally wrong and so were they.

Halem1982 profile image
Halem1982 in reply to

No, most dr’s have no clue what they are doing. I think they need to specialize in specific types of psychiatry.

HadEnuf profile image
HadEnuf in reply to

We ALL live in parallel universes (at least by some views of physical cosmology): fortunately, they overlap enough for us to interact!

The sheer alienness of neurotypical versus ADHD and ASD perspectives really does get in the way.

I think you got the answer to that right, I even laughed out loud because you are so right on. Most people have no idea what it’s like to have ADHD. I don’t even tell people because I don’t want to hear all their advices about a condition they don’t have a clue about. Everyone is a freaking experts now, especially those who think everything can be solved holistically with tea and herbs that are not even regulated so they have no idea if they are even getting what they think they are getting and paying for. It’s like buying street drugs, you can only hope it’s the stuff you are paying for. Not even the doctors have a clue. But then again, I want to give you an advice, Do Not Get On Antidepressants. It’s better to get depressed every now and them and you probably know by now, as horrible as depression is and paralysis us, it does pass. Always. I’ve started treating like other people treat the flu. I will get it again, it sucks, I don’t want to live because I don’t seem to be able to have the quality of life other people do, but it always passes. Life gets ok again until the next episode. So just chill 😉

stephenwbrandt profile image
stephenwbrandt in reply to

Yes I lost my jobs because of ADD and lost all friendly relationships

HadEnuf profile image
HadEnuf in reply to

Right with you, regarding the ones pushing snake oil: much of it's about as effective as recommending some organizational system that only works without ADHD.

So many people really do have NO clue what it's like—just what they assume from the behavior mostly of kids without ever asking anyone what they FEEL.

stephenwbrandt profile image
stephenwbrandt

I'm getting meds for Depression and Bipolar and they help but do nothing for my ADD

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