Those living with Anhedonia
I received a letter from a reader, convinced that autism was a state of torture, of being one of the living dead, unable to feel anything for anyone or anything in the external world.
Depression and rapid cycling bipolar are both now able to be identified in infants as young as 18 months of age. It’s possible that such infants may have these conditions even before they can be diagnosed.
Depression often leads to chronic withdrawal, limitation on activities, regression, reduced communication and interest in one’s surroundings, no interest in new activities, interactions or abilities.
Children with Selective Mutism who had lost speech often gained their speech back after treatment with antidepressants. Where once Selective Mutism was distinguished from speech loss in children with autism, it is now identified as one of a wide variety of causes of loss of speech in children on the autistic spectrum (though certainly not the only one).
Anhedonia is the inability to feel joy or sadness, nothing touches them. It is associated with depression but not as treatable as depression and Anhedonia to date is described as only partially treatable with medication.
Imagine a world where you can feel no joy for your own achievements and certainly no joy for those of others, a world in which you feel little or nothing for members of your family, your friends, the human race, where because everything falls flat – art, music, nature, spirituality there is no salvation for you. All you are left with is observation of a party you may never get to, and resentment, alienation. The writer who wrote to me described it as torture, living death.
Some causes of anhedonia have been found – sections of the brain involved in feeling empathy, emotion, and registering reward. Some people recover from Anhedonia as they recover from associated depression. For others the Anhedonia may be something they just continue to live with. The least we can do for those forced to live this way until treatment is found is to understand them, their alienation from and resentment of those who don’t suffer with the same and their lack of empathy in holding back from expressing that. One thing is certain, theirs is a tough road, one of the toughest, and none of us who do feel ‘alive’ would want to be in their shoes.
How many times have any of us said or thought ‘just get over it’.
Perhaps the least we can do is not expect such people to share in our joy or the joys the world has to offer. If they replace the emptiness with routine and activity, then lets at least not pressure them to smile and act as if they enjoy it.
If these were people without legs, would we insist they run around the block?
As for confusing Anhedonia with autism, the awareness of Anhedonia in some people, perhaps even infants with autism, is a valued addition to knowledge in that field. For without the capacity to feel empathy, joy or reward, development and independence will certainly be a hard road.
Whilst we continue to confuse those with perceptual and language processing disorders which cause meaning deafness and meaning blindness with those who have Anhedonia, we’ll not be able to direct each to the most fitting and understanding services. I wrote about each in The Jumbled Jigsaw, where I stress again, in the context of this article, there is no one-size-fits-all approach.
Why do people develop Anhedonia? It’s likely a ‘fruit salad’ of its own. One person may develop it following a long term depression they never came out of, a sort of neurological patterning. Some may have had a heartbreak, loss, trauma that lead to a progressive addiction to protection from emotion they originally found more painful than the flatness, and when the flatness became unbearable they had spent so long patterning themselves to avoid affect or the feeling of it they couldn’t find their way back. Some may have Alexithymia and Schizoid Personality Disorder complicating their Anhedonia but not know the one is severe inability to process/read their own emotions (so they are perceived as missing) but the feelings may still be in there (see ‘checking’ used in the book Like Colour To The Blind ) and the other has its basis in fear of intimacy and progressive safety in emotional self containment.
Some may have a brain chemistry imbalance relating to the pleasure triggers of Dopamine, or the happiness triggers of Serotonin and GABA and a urine analysis for the byproducts of these may help find out if everything is in balance. Food intolerance can disturb some of those and some people with untreated gluten intolerance in particular can have mental-emotional symptoms without the physical ones.
Dissociative disorders, which can set in as young as age 2-3 years old or anywhere there after, can go together with Anhedonia if one has become cut off from their Core Self as a result of severe loss, trauma, abuse, neglect. Essentially, if one is living dissociated from their Core Self how can one connect fully with the body, with emotions, feel things personally, especially the more vulnerable emotions and joy, hope, trust are feelings that open us up. For those with dissociative disorders this may also mean feeling the threat of retraumatisation so instead of reconnecting with their Core Self they stay protecting themselves from that, which can, for some people, mean they stay emotionally cut off.
Some people can slip into roles and lose sight of their true self, their Core Self, until all they have are these cardboard cut out representations. Those with BPD commonly live their lives in roles because of a weak or poorly developed Core Self, but this diversion into roles and loss of connection with the body self, the emotional self, also happens without BPD, just look at how some people get so fixated with achievement, with being popular or cool, or obliterating their connection to body, mind, emotions via substance abuse.
Frying one’s circuitry is also another route to then struggling to reconnect to the natural flow of emotions which is essentially a neural, a brain connection. Over doing that circuitry may amount to the same thing… progressive addiction to self injury or trying to continually heighten or exploit emotions to the point they lose their impact, their context, their variability and scope and then expecting these to bounce back in ‘every day life’ is like expecting that an overstretched rubber band won’t eventually lose its integrity, its function.
As for me, as a person with autism (and DID) who has perceptual, language processing and bipolar issues without Anehedonia, I’m going to do what comes naturally and buzz in a world rich with emotion, with or without meaning.
Donna Williams
This might explain a book I read at one point, the only book by an autistic person in which I got no sense of the usual autism-as-I-know-it. She seemed to regard autism not as a torture (that would require too much feeling), nor as a processing difference, nor as much of anything else I’ve seen it described as, but as a state of having no interest or joy in anything at all, combined with a compulsion to rock (which also seemed to bring no joy). I wonder if this is what was going on with her.
Good point, about not feeling enough passion to proclaim torture.
🙂
the torture part of is comes from other people misunderstanding us. That’s what I think of it……because when people don’t understand something, they don’t make good choices about whatever it is they don’t understand. It’s like….what would happen if someone had tried to use the ABA method on you when you were young? That would have been torture…..I think…..
Ivan writing for Athena.
My father always used an ‘Indirectly Confrontational Approach’ (which is outlined pretty extensively in the book, Exposure Anxiety; The Invisible Cage of Involuntary Self Protection Responses ). Also song, pets, nature, swimming, ARTism, opportunities for discovery learning, patterning in learning what would later be work related skills, the use of colored lights, kinesthetic learning (via objects), categories, rough and tumble, characterization and mimicry, humor and surrealism, typewriter.
My mother had her own pretty massive challenges but allowed or facilitated some really useful things, music, dance, respite in the countryside, hands-on discovery learning in the community, tough love (she had some serious issues but she also valued that children had to fend for themselves and I’ve benefited a lot from that and far more than mollycoddling could ever have given me), mirrors, fabrics and later machine sewing, reading indexes (at least I read something), supplements, anti-inflammatories and sedation and 15 years of antibiotics for bugs with primary immune deficiencies (they couldn’t treat that then).
All in all, for someone as seriously challenged as she was and her stuff certainly contributed to health and co-morbid challenges and perhaps lead to DID and PTSD (which are no small fish), I still think she was very innovative given it was the 60s and 70s, that a lot of my stuff was genetic and inherited, and I still think that looking at it overall I benefited a lot.
But when I was about 10, it was 1973 and the first autism-related literature and films were starting – pretty much blame the mother stuff – but included in there was the forced conformity push and holding therapy stuff. Anyway, I was not into closeness at all – very feral – so thank goodness she wasn’t the type to go for holding therapy – I’d have gone AWOL.
But she did try the forced conformity thing – one gets rather desperate when one’s child is 10-12 and still way off the wall and pretty ‘out of it’ – that is what we know today as ABA.
I DIDN’T COPE AT ALL (which I’ve written about in Nobody Nowhere and some of the text books I wrote). Basically I became far more disturbing and self injurious. And I’ve seen other kids for whom forced conformity is utterly terrorizing and sent them backwards. Sometimes it depends on the personality mix too and the degree of respect with which its done and whether the WHOLE child is considered.
But there’s others for whom the ABA thing has really helped (and for those it doesn’t it’s antithesis, an Indirectly Confrontational Approach, may work). One has to know who is who and that there’s no ONE approach for all people with autism.
… Donna Williams
http://www.donnawilliams.net
it’s very hard to live with anhedonia…i can’t go on like this,my life is broken.
i just want to know the reason , maybe i could go through it .
why i can’t enjoy what i do,every single minute , every experience , every situation , every relation , every new things , every crowd between friends and so and so
while all of the others smile and laugh as if something totaly excited…
why am i strange like that ?
Sarah,
many people are missing something, a few fingers, a foot, a functioning pancreas, good eyesight, the ability to fluently understand or use speech, the ability to recognise faces or their expressions, the ability to tell a physical from emotional sensation, to hold a simultaneous sense of self and other…none of us are totally whole and most of us will lose some functions by adulthood.
You have lost the function to PERCEIVE emotional experience. It is isolating, alienating. I had a breakdown when I was about 12-13 and went rather Catatonic for about 6 months. I felt 1000 miles away and couldn’t connect to my body, my mind, to language or other people. So I have some idea of what you’re experiencing and I’ve been close to someone who experiences Anhedonia perhaps partially due to the brain damage from drug use. It may do nothing for you but L-Glutamine 2000mg is an amino acid from GNC used by adults who have experienced brain damage and other things like learning disability. 30 days on it may at least show you whether it can help restore some of those connections and functions.
But if it doesn’t, sure, you are not like the social majority, and disability can be isolating, as if watching others through a glass window, in a world you may never get to truly live in as they do. As with autism, with Anhedonia there’s many people without these conditions who think that if you act ‘normal’ (their version) then, voila, the problem is gone, as if ‘to appear’ is the same as ‘to be’… in this sense those other people are part of the disability…. they can make the isolation worse.
Try and focus not on what you don’t have, but what you do. Try and look at yourself not as a broken ‘orange’ but someone who considering ‘apples’ (ie: those with Anhedonia) is actually otherwise fairly intact. For example you can still be useful, still be creative, you can still DO. What we do in life doesn’t HAVE TO be done from desire, want, feelings, motivation. It is ok to be cerebral and say, one is an ant in the human race of ants, part of a big ant army, and one can choose to be a useful, creative, active ant in that social collective.
Link up with others who have their own missing parts and who fixated not on what they don’t have, but what they do.
All the best.
Donna *)
http://www.donnawilliams.net
it may also be you don’t have Anhedonia. An inability to simultaneously process a sense of self and other especially if combined with social-emotional agnosia and poor processing of which feelings one is having can all combine to be easily confused with Anhedonia, especially if one is also a relatively ‘autistic’ personality (ie many solitary personality traits). Maybe look at Nobody Nowhere and see how your Anhedonia compares with autism.
I have been diagnosed with this and yes its hell on earth
Hi Dave,
thanks for dropping by.
it is important to hear firsthand from those who have the condition.
how did yours develop?
was it always there?
D.
To the others who suffer from anhedonia: where do you go? I’ve been to my family doctor, a therapist, two psychiatrists, and a neurologist. I’ve tried a number of medicines; nothing has helped.
I was diagnosed with temporal lobe epilepsy when I was three years old, went on anticonvulsants, and the seizures stopped immediately. I stopped taking the medicine after a couple of years. When I was about 12-13, something happened all of a sudden and I began experiencing panic attacks. When those subsided a few months later, I realized that I could no longer feel anything. Nothing was fun or interesting anymore. I just turned 20 a few days ago and nothing has changed since then.
I can’t actually feel angry, but there’s no denying the burning resentment I now have toward my peers in college. Everybody but me is having a good time, and my friends assume that I’m gay because I don’t respond when women flirt with me. I just go to class/work and go home. Nothing else is worth the effort.
So, now I’m just searching “anhedonia” on the internet.
Hi Phil, given you can still passionately feel anger is it possible you’re dealing with depression rather than anhedonia. At 12-13 was that an emotional breakdown? If so, could it have been that you ‘solved’ it by severing fear/excitement (same emotional scale). It might be time to try bungee jumping or extreme sports to find and reclaim fear/excitement by showing yourself they can be safe and won’t lead to emotional breakdown. It’s worth a try. Try other things too, non-human ones, try a floatation tank, a mud bath, a thermal spring, get on a trampoline (movement frees emotion), spin, jump, reclaim movement and let the body wake up again.
Hey Donna,
I can’t actually feel anger, but that doesn’t mean that I’m not frustrated. To make things worse, people keep telling me about how college is the best time of my life.
When I was 12, I didn’t have an emotional breakdown. I had panic attacks; the only emotion involved was fear. I do get physical activity, and since then I have tried doing things that would give most people a rush.
After searching for anhedonia last night, a lot of websites suggested taking SAM-e supplements. The amino acid that’s used to make the compound is primarily found in nuts and seafood, and I’m highly allergic to both. Odds are my levels are far below average. I started taking some today and I’m hoping for the best.
I’ve tried Same-e but I found L-Glutamine 2000mg is more powerful and I’ve been taking it for 20 years now. I’ve seen it shift Anhedonia in one man, and in others they began to cry and be moved for the first time after 30 days on L-Glutamine. It’s from GNC stores, cheapest in powder. It raises GABA.
[…] The writer who wrote to me described it as torture, living death.” I found this here: http://blog.donnawilliams.net/2007/03/06/the-living-death-of-anhedonia/  This is so painfully about me…all about me me me, what’s the matter with […]
I’ve been cursed with anhedonia since 2008. It started after a schizophrenia-related psychotic episode. My ability to experience joy, excitement, and the warm feelings that accompany social bonding completely vanished after that. Doctors prescribed me antidepressants, stimulants, antipsychotics, and even had me go through electroconvulsive shock therapy, but nothing changed my state. Every day truly is a living death. And there is no cure or treatment for this. Actual death would be preferable than being alive and conscious with no feeling.
Hi Camille,
you could try 2000mg-5000mg L-Glutamine for 30 days. Adults take 2000mg but those doing body building and CFS take up to 5000mg. I knew 2 people with Anhedonia who took it and came out of Anhedonia. May be worth a try and certainly a better alternative to death. It’s used in many ways including an antidepressant and in Schizophrenia among other conditions. Excess causes mania
let me know if you try and and how you go.
Donna, you still there?, last time anyone said anything it was 2010 of march, this blog is probably abandoned, if not I hope for you reply then Donn.a
I have ask of you fellow Anhedonia suffering people if there hope, it there hope Donna,
reason for me to live?
The more I read about other people like myself, the less encouraged I get about finding a cure.
If I can’t find a cure, my death will be inevitiable in the few years, after all the grains of sanity I have left has parished after years of loathing in empty-ness.
Donna, do you have any website/forums for people like us?
I’m actually dealing with cancer since July 2011. But here’s some forum links for you
http://www.depressionforums.org/forums/topic/13738-anhedonia/
http://www.experienceproject.com/groups/Have-Anhedonia/48444
http://forums.webmd.com/3/depression-exchange/forum/1484
Hey Walter,
I know what you mean saying death is “inevitable”. Just today I was able to give my struggle a name: anhedonia. Seems like I have experienced it for the last 20 years, but the last 2 have been the worst. My logical brain has decided to fight it even though most days the fight isn’t there. I have two little girls and know I won’t put them through their father’s suicide. Believe it or not that conscious decision has intensified a feeling of being trapped. If you read this and want to correspond let me know.
Hi, I’m rather confused. I’m a teenager, and I know teenagers are just pretty screwed up in general due to brain development and hormones and all that other wonderful stuff. However, if you could stick with me, I think I may have a legitimate problem. Over the past several years, I have sunk into (what I think is) depression. I don’t really want to go into the details or theories I have about how or why I got depressed, because that would take a lot of room. Basically though, my general mood/state progressed like this- 1) anxiety (there was just this constant feeling like I had to constantly keep my mind busy to take it off something, except there was nothing to keep my mind off of, as far as I know) 2)depression (grades dropped, stopped talking to friends as much, became withdrawn, felt sad/in pain/hopeless fairly consistently, again no logical/solid explanation) 3) Now, I think I might be developing anhedonia. Overall, I don’t feel as bad as I did before. I’m not in pain/feeling hopeless as often as I was before, which is good (I think?), but I’m also not really happy/hopeful either. Just sort of existing, spending my classes watching the clock, talking to my friends because I feel obligated too. It’s not I feel like a robot, it’s just like my emotions are fading away. They take longer to register, and go away faster. They’re sort of like listening to a song through a concrete wall, for now they’re still there, but their a bit muffled. By itself, it isn’t that bad. The problem is when I regain the same senses a normal person has, the pain and hopelessness (again, no good reason behind, probably still from depression) comes back, and I come to the realization that my emotion is leaving me. There are some rather safe things things I’ve found I can do that help me feel a bit more alive (running in thunder storms, going rock-climbing, or going on a rollercoaster, basically anything that pumps me full of adrenaline) but the more I use them, the less effective they become. Any idea if/how I can turn this around? I am in general, motivated by passion. I have no clue wtf I’d do without it.
Part of me thinks that I could me doing this to myself, instead of it being purely biological. I’ve always been able to supress my emotions effectively. And I’ve always been loathe to feeling vulnerable. Is it possible for people to supress their whole range of emotions?
Anhedonia is hell. It’s like being halfway dead but still being forced to do all the work of livig life, with none of the rewards. Only torture could be worse than this. Someone up there said death would be better than Anhedonia and I agree. The only thing that keeps up alive is that maybe we might get out of it. I would trade this for cancer in a second.
perhaps thats the answer… I’m dealing with cancer and it causes me to find joy in every moment… maybe Anhedonia is sometimes the result of a mind and body that finds no survival related challenge on a day to day basis, that it is missing our old prehistory days of wooly mammoths and saber tooth tigers… maybe extreme sports might work!
Anhedonia is the result of extreme stress and biological and genetic weaknesses in most cases. Others get it from those poisonus pharmaceutical drugs or other types of drugs. And there is no answer, other than fixing the physical/chemical problem at it’s root. There’s an old saying, if the body is broke, work on mind. If the mind is broke, work on the body.
And by the way that’s a well-written article up there. It will help others understand, those people who only have “the inability to experience pleasure” definition to go on. I hope you can write some more. Those suffering from this desperately need someone to represent them and bring awareness to this illness, probably the worst illness in the world.
i am 33 years old and have suffered from anhedonia my entire life basically…if it wasnt for exercise and certain drugs i would have lost my mind years ago..in fact, i have wasted so much of my life feeling this way that i am pretty far gone…the only thging that keeps me going is not wanting to see my family hurt and i dont have the energy or dedication to commit suicide..other than that i basically just force myself to live every day, no rhyme or reason to my life at all..i cant sustain relationships at all with anhedonia, not even friendships so i fail to see what the future holds, if anything..
anhedonia is an affliction that goes beyond describing..
I know exactly what you mean Billy. You said it all.
I emphasise with all who have commented. It is the most debilitating thing that can happen to anyone, continual flatness day in day out – not wanting to be with family or friends due to deadness inside and also it can make it even worse as you see how much you are missing on life, due to your own inablility to feel. I’ts been 14 yrs and still counting. I agree with Donna, I went through cancer several years ago and did feel ‘more life’ in me and went through the process very well, however on looking back this devastating mental deadess was/is much more trying and ‘hung around ‘ throughout the process. I have been looking for cures for all this time, tried numerous things and some work for a while. I have foun the most worked through explanation could be, a malfunction of the HPA axis – as several people have cured themselves through licorice root, etc… It’s funny, people that have anhedonia know exactly what you mean when you try to describe it i.e. you can’t listen to music anymore ( i loved music), watch movies, read books etc as there is no enjoyment in anything, just deadness inside … however trying to explain it to a ‘normal’ person, they think you’re from another planet or should just snap out if it – ha if only we could!
People call anhedonia ‘depression’ but it is that dead feeling that makes all the difference in the world; I would much rather have depression than anhedonia.
And to dmartin yes if you would like to talk I would too. If you read this put up another post and I will check back soon.
yes munequita, id almost say im not even depressed anymore but still have anhedonia to the extreme..it isnt even a sad mood, its more the ‘dead inside’ feeling..nothing excites or moves you in any way, you simply go from day to day existing.
im surprised there arent forums dedicated to anhedonia and the treatment of it.im sure it is a root cause of drug addiction..
Billy, have you tried 2000mg L-Glutamine for 30 days? it raises GABA. My younger brother had anehdonia and it cracked it for him. If you try it let me know if it helped.
^^i havent tried glutamate but do take phenibut and other drugs that raise Gaba..it barely touches my anhedonia.i dont even enjoy sex..
i just started welbutrin so we wil see how that works.
I have been troubled for a number of months, with a condition that developed after an injury. At one point it was perceived as Anhedonia, but subsequently that ‘assessment’ fell apart. I can still recognize and perceive feelings, I am highly intuitive and empathetic. I can still feel some emotions, but not one “positive” one.
I can feel sadness, anger, hatred and such. I can remember love and pleasure and happiness. But I can’t feel them any more.
The closest I can come to feeling good, is to have an outlet for sadness.
Several months ago I was hit by a car, and my injuries were surprisingly minimal overall. But I was in and out of consciousness for several days. It wasn’t for weeks later that it started to occur to me, that I didn’t feel anything “good”
Eventually, after 4 MRI’s At least 2 CT scans, and I can’t remember all the other tests, I’ve kind of stumped multiple neurologists, psychiatrists and others as to what is really going on in this head of mine.
So I live, day by day, consciously processing everything that bothers me, so I can try to determine what I should not care about, and trying to resolve the things that are genuinely relevant.
It gets more challenging every day, but I owe it to myself to try to find my way back to some semblance of normality.
Being a person who always has been caring and compassionate, it has cost me friends, because I’m not who was. But for now, I simply strive to be true to who I was, who I am, and the memory of what used to matter.
sorry to hear your situation Scott. Might be worth trying 30 days on 2000mg L Glutamine… if it works then the issue is likely metabolic… also get your vit D and vit B levels checked and omega 3s…. deficiency in any of those can contribute to low mood/inability to feel pleasant emotions… and it may be coincidence that the accident coincided with such deficiencies… you’ve got nothing to lose in covering those bases.
Back in 2009 I had a physchotic episode. the docters called it schitzoeffective disorder. After that episode I had two more break downs. The doctors later told me that I had Anhedonia. I had no emotional feelings at all I could not get happy or angry or even sad even though I shed many tears of frustration. I looked up everthing I could about Anhedonia and on some sites they would say you should exercise. but how can you do that when you don’t have the feeling to live more or less excersice. I am a Christian and I have been at the same church for 23 years. My mom and my best friend was there to pray me through. The docs perscribed me with risprodone and celexa. I do not condone anyone getting off of their meds but I just had a feeling that is what was making me stay this way. I got off the rispirdone and my doc said that the symptoms can come back in 6 months. that was january 2012 the symptoms came back in 7 months. I had another episode that lasted for 8 weeks and at the time I was in college taking classes. I got back on rispirdone in july and it messed all of my classes up. It through me off schedule and I could not function right. I stopped taking my meds again and got baptized again in my church on August15 and I have been fine every since. My feelings came back 100% in march 2012. I think if I would have stayed on those pills my feelings would have left again. I don’t know that for sure and if your doctor tell you to stay on your meds you do that. my doc oked me to get off my meds because I was not a threat to myself or others.
Has anyone who has written on here ever found a cure? If so please come back and share. Even if not, I hope you will update on how your doing, treatments etc. If you are truly searching for a cure you should be active in reaching out to others with the same condition.
Your descriptions of the causes of anhedonia made a lot of sense and really helped me. I think I’m somewhere in between frying the circuits and trying to cut off emotionally from negative experience.