The Grief process after being diagnosed with Adult ADD/ADHD.

[anonymouslyadd]

Originally Posted by Alliee

I just grieve outloud on here. Call me dramatic but, I'm happier I guess. some people in real life wouldn't want to listen, for example, when I was in high school my mom couldn't handle my emotions when all I wanted to do was cry sometimes. I am not like my mom. If someone's upset I want to drop everything to make them feel better usually. That's just how I am. I've realized a lot of people on here are similar. It also helps that understand more than other people.

I think you're being expressive.

That's what I mean. Generally, people in real life don't want to hear about my struggles with ADD. Yea, I'm grieving on this Forum, which means the world to me.

When I would complain to my mom, sometimes she would break down and cry. It helps me immensely knowing I'm not alone. Thank you for sharing.

I like making people feel better too. I think my suffering with ADD has made me more compassionate.

[Smokey405]

Originally Posted by Alliee

I think it's important for people with ADHD to grieve outloud to others and get someone to help them process their grief in that way instead of keeping it inside. I think they also need to do it over and over again.

There were a few times I would do a blog post to get it out there. Sometimes not so much as to have an instant response (or maybe any response at all), but having an outlet like that helped.

At the same time, I was fortunate that out of the many friends I have, there were several that encouraged me to grieve and talk to them. So that was refreshing that others wanted to help and gain an understanding of things and me even better.

But we may not always have someone there when we need them at that moment, however I'd like to think that any of us can find someone to rely on. And at the same time, just being on this forum and responding to threads and being an active participant is in a way somewhat part of the process.

[shavedfsh]

I didn't grieve. I found relieved to know that I was right about the fact that I was not NT.

[phantasm]

I'm thankful for this thread. It really helped.

[justtim]

Originally Posted by leapofaith

stage 1: Relief and optimism
i’m not retarded, i’m not schizophrenic, i’m not bi-polar or just plain stupid. I have adhd….
stage 2: Denial
there is no such thing as adhd, i’m just lazy…
stage 3: Anger and resentment
if my third grade teacher would have noticed this, i may have gone to college….
stage 4: Grief
my undiagnosed adhd made life so painful for me…
how do i cope with adhd and repair the damage of the past….
stage 5: Accommodation
i accept i have adhd, i am using work/school accommodations to compensate for it…

Wow, I can't believe how much this nails what I've gone through. It makes me feel a little bit better that others go through the same feelings. Not that I'd want anyone to go through this but it makes me feel less "crazy" to know others face it as well.

I believe I'm in Stage 4 1/2 right now, with occasional trips back to Stage 3 as I recall certain events of my life. I'm in treatment now and very hopeful it can make some lasting changes for me.

[TheChemicals]

I didnt grieve when i was diagnosed. Is it common to feel grief when you learn you have adhd? I was just happy the psych didnt tell me i was legally retarded. That would have made me sad face..... like this

[LordranBound]

I definitely felt and still feel grief. It's not so much grief that I have it, but 'how things could've been much different had I known this a long time ago'.

Funny though, as I write this I realize that it's that way in just about every facet of life. Love, school, business, friendships... I wish I knew then what I know now. Some might not want that; might want to have the innocence back("Wish I didn't know now what I didn't know then" B Seager anyone?). But I don't think there's anything romantic about ADD 'innocence'...

[zenner]

I am so grateful to have found this forum, especially tonight. I am a forty-year-old male, who was diagnosed with adult AD/HD last Tuesday. After my appointment, I went home with a script for amphetamine and immediately started researching AD/HD. After reading article after article detailing the signs and symptoms of AD/HD and story after story of AD/HD adults' lives, I sat in shock, because I felt as if I were reading my own biography. Initially, I felt I had discovered The Holy Grail. But, just to be sure, I took a few online assessments, developed by psychologists. One of the assessments was a collaboration between Harvard, NYU, and the WHO, so I trusted its integrity. These assessments revealed that, not only was there no doubt I have AD/HD, but my symptoms are relatively severe. After the elation of discovery, I think I felt a sense of relief that I finally had an answer for nearly all of the struggles and suffering as well as most of the tragedies of my life. But, as the reality of it sunk in, my grief began. I realized that I had lost 23 years of my adult life to AD/HD. I've never had a career. I've had more jobs than I can count. I've made impulsive decision after impulsive decision, some of which have caused me to lose everything. I've destroyed a number of relationships between my anger and neglect and even my marriage. I have jumped from religion to religion ... Nothing, absolutely nothing has ever been stable in my life. The one accomplishment of my life: I managed to graduate from college, after only 11 years, 5 institutions, and several semesters from which I completely withdrew--because I couldn't focus.

Tonight, I sat in front of a "therapist" who is a Licensed Clinical Social Worker (LCSW). I was detailing all of the foregoing. He incredulously asked, "How has it taken your entire life?"—as if it was the most ridiculous statement he ever heard. And then, he made his pronouncement that I was "obsessing" over my AD/HD. He asserted that I now have the medication and tools I needed to move forward and be completely successful. So, I guess I was allotted only one week to grieve, and now I should be overjoyed with my "bright" future. I wanted to ask him what "tools" he thought I had to deal with the situation. (I thought that's what I was in his office for.) Defeated and even more depressed, I just sat quietly. My psychiatrist and I haven't even figured out the therapeutic dose of my medication yet. And, not only that, I'm on three other drugs to control my depression and anxiety. This therapist did nothing but wound me deeper. I've felt like a horrible person all my life—lazy, unmotivated, incompetent, angry, hurtful ... just plain evil. For most of my adult life, the only thing that kept me from suicide was the fear that Hell was waiting on the other side. But, maybe all of this doesn't equate to be robbed of my life. Perhaps, I don't have the right to grieve for all of those lost years, my undiscovered potential, and all the people I've hurt and lost. If my self-esteem hadn't already been destroyed before I walked into his office, it certainly was after I came out.

I've decided that I can't trust the mental health "professionals." Unfortunately, I'm locked in an HMO, which will not allow me to go out of the organization, and its definition of psychotherapy is an appointment with a social worker every five to six weeks, most of whom completely minimize any issues I am having. Thanks, but no thanks. (Having said that, I must concede that I have a wonderful psychiatrist and feel fortunate to have found him.) My next step is to try to find a support group in my local area. Apparently, we AD/HDers are the only ones who can understand and empathize with one another. Thank you everyone for sharing your stories so vulnerably. You have really helped to validate and comfort me this evening. And, I'm deeply grateful for the article on grieving. My very best wishes to all of you.

[sarek]

Hi Zenner, welcome to our forum! I think my story is not at all dissimilar to yours, minus the unhelpful therapists. Most likely he had nothing like AD(H)D himself so could not possibly begin to understand you.

I always liken it to trying to explain colours to a colour-blind person. Its just a whole different world. Outsiders have not the faintest idea about the neverending war we are fighting every day. I think day-to-day survival is already an accomplishment.

[sweetmusic]

Hi and welcome, Zenner. I can relate to a lot of your frustration and how you feel about having lost so much of your adult life because of ADHD, the career (or lack of) and job problems, etc. I didn't grieve when I was finally diagnosed, I think I was actually a little reLIEVED, just to know that there were medical/chemical/explainable reasons for why my brain didn't function "normally" and why my life was so full of frustration. I'm still struggling but trying my best to deal with things. Feel free to send a private message if you want to communicate outside of here. Hang in there, friend...

[zenner]

That's an excellent analogy, sarek—one I will indubitably use; thank you.

I appreciate both of you sharing your experiences, sarek and fanfare123. I know I will not grieve forever; I am a survivor, and I keep going. But, had that therapist acknowledged my right to grieve, he would have done wonders for the process. But, no mind, because I got that acknowledgment here.

Again, thanks much to both of you.

[mellissabee]

I wish I was grieving. At least within grieving there's room to more forward. Right now I'm just waiting and not knowing. I don't know what to do to help myself. Days go by and I start crawling back towards depression. I have been wait listed to see the psychiatrist after talking to my Dr about the same issues for 3 years. I need someone I can talk to who isn't just a compassionate ear (my husband). I need someone to give me the tools I need to get on top of this, to fight through this and become the person I know that I can become.

[msmedieval]

When I found out about my ADD last year (by accident too) I was surprised to find out I wasn't relieved like I thought I'd be (I always knew I was 'off'), I got very upset & disappointed. I felt like I was cheated of my childhood & teen years by constantly feeling like I wasn't good enough (& being told over & over that I wasn't good enough), then I realized that all the stupid clumsy mistakes I had done in the past weren't really my fault. I cried for days!

[kelsiemay77]

Oh man! I thought I was being unreasonably emotional about everything. I randomly started researching ADHD one day a couple months ago because I've always had a feeling I have it, despite being told I don't (by psychiatrists no less) because I'm "not hyperactive." After reading about it for awhile and then finding this forum, I had a sudden realization that this is EXACTLY what I've been dealing with my whole life, and I burst into tears. It was a total epiphany. I marched right into a psychiatrist's office, who referred me to a Ph.D. who specializes in ADHD testing. I got the answers (and medication) I've been looking for my whole life, and I've definitely gone through all of the grief stages (except denial. I'll give that one to my teachers and awful misinformed doctors). I'm so relieved that I'm not crazy, I don't have bipolar disorder like I was told I had for so long, there's an explanation for my behavior and quirks! Of course I want to rip into all of the people who told me it's my fault I'm failing, that I'm lazy, and I'll never make it in life because I "don't try hard enough." I want to kick them all in the shins and say "I TOLD YOU SO!" and tell them how much they hurt my self-esteem over the years. I've also got major anxiety about all of the risky and hurtful things I did in the past on impulse. If I would have been treated as a kid when I first showed signs, how different would my life be now? How successful would I be? Why did I think I didn't need treatment for so long, which caused me to spiral into a whirlwind of irresponsibility and self-destruction for most of my 20s?

But right now, in this moment, I've got such a peace of mind. I mean, I've still got a hundred thoughts in my head going in a hundred different directions, but the sludge of frustration and low self-esteem isn't there. I finally feel satisfied. I'm excited to know that the treatment I'm receiving will finally give me the opportunity to prove that I CAN go far and exceed all my expectations. I don't have to settle for being an underachiever anymore.

[Chewythedog]

Originally Posted by leapofaith

In some way, shape or form, we all go through the grief process whether we are diagnosed or come to this conclusion all on our own.

It is as different and personal to each individual as their finger prints. I found this article for those who are new here, new to the diagnosis or didn't know this happens to all of us.

I find myself posting about it often, probably because I myself was not made aware of it. I think that had I known what I was going through, it would have made it a little easier.

Unfortunately, the Psychiatrist who started me on medication after being officially diagnosed, didn't know much about ADD. I wasn't given information about the medication or what I could expect in the beginning. I spent 2 long years depressed, lost and mostly in denial, fighting my ADD and its symptoms. What a futile waste of time and energy!

I hope this is helpful to others!
In some way, shape or form, we all go through the grief process whether we are diagnosed or come to this conclusion all on our own.

It is as different and personal to each individual as their finger prints. I found this article for those who are new here, new to the diagnosis or didn't know this happens to all of us.

I find myself posting about it often, probably because I myself was not made aware of it. I think that had I known what I was going through, it would have made it a little easier.

Unfortunately, the Psychiatrist who started me on medication after being officially diagnosed, didn't know much about ADD. I wasn't given information about the medication or what I could expect in the beginning. I spent 2 long years depressed, lost and mostly in denial, fighting my ADD and its symptoms. What a futile waste of time and energy!

I hope this is helpful to others!

This article originally appeared in the November/December 2000 issue of LDA Newsbriefs. For
more information on the Learning Disabilities Association of America, please visit the LDA
website at www.ldanatl.org.
1
GRIEF: THE FORGOTTEN EMOTION
OF
ADULTS WITH LEARNING DISABILITIES
Kevin T. Blake, Ph.D.
One emotional concern that has far too often been overlooked in adults who have
for the first time been diagnosed as having learning disabilities and/or ADHD is that of
grief. Grief is a normal reaction to a traumatic life event (i.e., death in the family,
diagnosis of cancer, loss of a job, diagnosis of a learning disability, etc.) Grief has
definite stages which may lead to resolution as was demonstrated by Kubler-Ross’ work
with terminal cancer patients in England. Persons going through a grief reaction may
experience a loss of interest in things they previously found pleasurable, depressed mood,
sluggishness, problems with sleep and/or appetite, as well as guilt. Grief has a natural
progression and is usually time limited.
Murphy and LeVert (1995) wrote about the six stages of coping that a person may
experience following the diagnosis of ADHD. These can be applied to those with
learning disabilities. They are as follows:
Stage 1: Relief and Optimism
I’m not retarded, I’m not schizophrenic, I’m not Bi-Polar or just plain stupid. I have
ADHD….
Stage 2: Denial
There is no such thing as ADHD, I’m just lazy…
Stage 3: Anger and Resentment
If my third grade teacher would have noticed this, I may have gone to college….
Stage 4: Grief
My undiagnosed ADHD made life so painful for me…
How do I cope with ADHD and repair the damage of the past….
Stage 5: Accommodation
I accept I have ADHD, I am using work/school accommodations to compensate for it…
2
Initially it was believed the grief reaction adults would have to receiving a
diagnosis of learning disabilities and/or ADHD would be non-existent or at the very
worst, quite mild. However, as clinical antidotes have been accumulated this does not
necessarily appear to be the case. The severity and chronicity of the grief reaction an
adult with learning disabilities and/or ADHD may experience appears to be quite
variable. Individuals with very mild learning disabilities and/or ADHD symptoms
without a history of significant life trauma may experience a minimum grief reaction. If
the person does have a grief reaction its course tends to be short and that person reaches a
level of acceptance of the disability quickly, with few relapses. However, a person with
severe learning disabilities and/or ADHD as well as more pronounced life trauma may
have a chronic and intense grief reaction. In such cases, a person may need individual
counseling, and psychoeducation to learn more about the disability and/or medication to
help treat depression, etc.
Regarding prolonged grief, Goldstein (1997) wrote: It has been reportedly
suggested that adults with ADHD and LD struggle with grief over their perceived
incompetence and lifetime difficulty with meeting everyday expectations (p. 260). Often
adults with learning disabilities and ADHD have problems with low self-esteem as a
result of their more difficult life course created by the disability. As Ryan (1994)
wrote…when the dyslexic succeeds, he is likely to attribute his success to luck. When he
fails, he simply sees himself as stupid (p. 9). This low self-esteem may compound a grief
reaction, by making it more severe and chronic. It is not uncommon for an adult with
learning disabilities and/or ADHD to repeatedly re-experience grief reactions after the
initial experience of grief. This re-experiencing of the grief reaction tends to be triggered
by present day life traumas and perceived failures, which the adult with learning
disabilities and/or ADHD believes are caused by the disability. Hence, unchecked grief
can be a constant companion.
Sometimes a person can become lost in grief and develop a Major Depressive
Episode. If the person goes at least two weeks with a significantly depressed mood, is
socially withdrawn and has lost interest in things the person usually is quite interested in,
the person may have clinically significant depression. In such situations, it is important
that the person be assessed by a mental health professional and treated if necessary.
The newly diagnosed adult with learning disabilities and/or ADHD should be
made aware of the potential for a grief reaction and the possibility of a Major Depressive
Episode, which will require a consultation with a mental health professional. This should
be done by the diagnostician. Just sharing this with an adult with learning disabilities
and/or ADHD can help to normalize the grieving process and reduce the risk of
complications in its progression. In a very real sense, knowledge is power.
Often the loved ones of an adult recently diagnosed with learning disabilities
and/or ADHD are negatively affected by the individual’s grief reaction. The diagnosed
adult may become less attentive to personal responsibilities, lash out toward others, or
become withdrawn. Such behaviors can make family life taxing and difficult. It is
important for the family and loved ones of the adult with learning disabilities and/or
3

ADHD to know that grief is a normal human reaction to their

loss or disability. If the

person’s depression and grief is significantly taxing to the family, family therapy should
be considered.
Sometimes the stress of learning to compensate for and cope with one’s learning
disability and/or ADHD can be overwhelming. For example, learning how to use
Recordings for the Blind and Dyslexic, a voice activated word processor, or how to work
with an ADHD coach while one struggles to maintain home and/or school/work
responsibilities can be quite stressful. Often the initial attempt at accommodation may be
ineffective. Finding the accommodations that are most helpful may be the result of a
prolonged course of trial and error. This process can be disheartening, which may further
complicate the grief reaction. Families and loved ones need to be aware of these new
stresses in the recently diagnosed adult’s life. Their understanding may serve to diffuse
family tensions.
Employers also need to understand the challenge facing the newly diagnosed
adult and how the disability may affect his or her productivity. Often newly diagnosed
employees have not met employer expectations, and the employees will need to remedy
this. Employees need to learn about their disabilities and how to accommodate them.
These employees may not know their rights, how to ask appropriately for reasonable
accommodations, or how their disability is manifested. Employers should be encouraged
to instruct their personnel manager to expedite this process by being open to the
recommendations of consulting professionals who have worked with the employees. An
informed employer will be aware that the process for a newly diagnosed adult to become
a better worker can be emotionally difficult for the employee. Thus, it is important for an
employer to be flexible. This may include reducing the employee’s responsibilities or
granting a temporary leave of absence (i.e., mental health days). It is important for an
employer to remember that often it is less expensive to help the employee through this
transition than it is to terminate the individual, search for, hire and train another
employee. The above assumes there have been no violations of the employee’s civil
rights (i.e., ADA, etc.).
The area of emotional and mental health concerns of adults with learning
disabilities and/or ADHD is quite complex and new. This article has dealt with the grief
reaction often experienced by newly diagnosed adults. There are many more types of
significant emotional problems experienced by adults with learning disabilities and/or
ADHD, which the LDA mental health committee will address in future issues of
Newsbriefs.
4
References:
Goldstein, S. (1997).

Managing Attention and Learning Disorders in Late Adolescence

and Adulthood: A Guide for Practitioners. New York: John Wiley and Sons.
Murphy, K. & LeVert, S. (1995). Out of the Fog: Treatment Options and Coping
Strategies for Adult Attention Deficit Disorder. New York: Hyperion.
Ryan, M. (1994). The Other 16 Hours: The Social and Emotional Problems of

Dyslexia. Baltimore, MD: Orton Dyslexia Society.

That was a helpful read thanks for posting - I read somewhere add/ADHD are illnesses of lost opportunity but must focus on what is possible today ( at least for me) cheers