I have written somewhere in here that my marriage has been difficult. If you’re married for nearly two decades, then I think, at some point, there will come hard relational times. It’s inevitable and normal. I am someone who doesn’t like to put up with hard times. I feel driven to fix them. I want to know what’s behind the problem. If I am experiencing what I feel is pointless suffering, then I will do whatever it takes to either end it or, at least, add meaning to it. I am the opposite of passive.
I seem to be married to my foil. If I am a hare, then he’s a tortoise. Nay, a rock. I run around him. Over and over again. This can be good if it creates stability in a relationship, but it has created inertia and so much more.
After a while, one must ask: What is going on? Why am I in such pain? Why am I sick all the time? Why does he say that he’s happy when I feel like a black hole has opened up in my chest?
Let me introduce you to Affective Deprivation Disorder:
Affective Deprivation Disorder (AfDD) is a relational disorder resulting from the emotional deprivation sometimes experienced by the partner (or child) of persons with a low emotional/empathic quotient or alexithymia.
Coined by researcher Maxine Aston, AfDD was first applied to partners of adults with Asperger Syndrome, many of whom showed disturbing physical and psychological reactions to the lack of emotional reciprocity they were experiencing in their relationship. Maxine was later to broaden AfDD‘s applicability to include disorders other than Asperger’s such as depression, eating disorders, posttraumatic stress disorder, personality disorder, and substance abuse disorder in which the same low emotional intelligence or alexithymia is a key relational factor.
To qualify for a diagnosis of AfDD some or all of the following indicators in each category must be present:
One Partner must meet criteria for a diagnosis of one or more of the following:
• Low Emotional Intelligence
• Low Empathy Quotient
Relationship Profile includes one or more of the following
• High relational conflict
• Domestic abuse: emotional and/or physical
• Reduced marital or relationship satisfaction
• Reduced relationship quality
Possible Psychological Symptoms of AfDD
• Low self esteem.
• Feeling confused/bewildered.
• Feelings of anger, depression and anxiety
• Feelings of guilt.
• Loss of self/depersonalisation
• Phobias – social/agoraphobia
• Posttraumatic stress reactivity
Possible Psychosomatic Effects
• Loss or gain in weight.
• PMT/female related problems.
• ME (myalgic encephalomyelitis).
• Low immune system – colds to cancer.
Similar symptoms experienced by the SAD sufferer, are experienced by the AfDD sufferer. Yet there is an even more damaging effect for the AfDD sufferer insofar as it is another human being, they probably love, who is unintentionally responsible for their emotional deprivation. Emotional reciprocity, love and belonging are essential human needs, if these needs are not being met and the reason why is not understood, then mental and physical health may be affected. Awareness and understanding can eliminate this.
AfDD is a consequence of the relational situation a sufferer is in, therefore it is possible to find ways to rectify this. Just as sunlight restores the balance in SAD – emotional input and understanding can restore the balance in the person affected by AfDD. Relationships when one partner has alexithymia can work if both partners work together to understand their differences and develop a better way of communicating, showing emotional expression and loving that works for both of them.
The following treatment issues can be explored with those suffering AfDD:
• Rebuilding Self Esteem
• Having a voice
• Looking at negative responses.
• Looking at self image.
• Building confidence.
• Becoming assertive.
• Attending a Workshop.
• Identifying Parent – Child roles.
• Changing learned helplessness.
• Rebuilding self.
• Rebuilding family and relationships.
• Rebuilding a social life.
• Finding support. (Maxine Aston)
What is alexithymia?
Alexithymia/ˌeɪlɛksəˈθaɪmiə/ is a personality construct characterized by the sub-clinical inability to identify and describe emotions in the self. The core characteristics of alexithymia are marked dysfunction in emotional awareness, social attachment, and interpersonal relating. Furthermore, individuals suffering from alexithymia also have difficulty in distinguishing and appreciating the emotions of others, which is thought to lead to unempathic and ineffective emotional responding. Alexithymia is prevalent in approximately 10% of the general population and is known to be comorbid with a number of psychiatric conditions.
Alexithymia is defined by:
- difficulty identifying feelings and distinguishing between feelings and the bodily sensations of emotional arousal
- difficulty describing feelings to other people
- constricted imaginal processes, as evidenced by a scarcity of fantasies
- a stimulus-bound, externally oriented cognitive style. (online source)
My husband is alexithymic. He also has crippling anxiety combined with what looks to be disturbances in his personality. He has low emotional intelligence to be sure and poor cognitive empathy. He cannot name his emotions, and he has no idea why he does things. We are not able to have meaningful discussions about anything. We have never been able to do this. When we were in the first year of our marriage, I thought he was being difficult. I had never encountered another human being who could not name their own emotions.
“How do you feel?”
“I don’t know.”
“Well, I understand not being sure about something, but…”
“No, I mean I don’t know what I feel.”
He couldn’t identify or describe any of his emotions outside of feeling “depressed” or very angry. He had constant feelings of getting sick (somatic complaints). He lacked empathy, and he didn’t understand why I expected him to be able to anticipate needs or intuit things. I assumed that he was capable of that. As an example, when I was pregnant with our first daughter, I was put on bed rest for the last few weeks of my pregnancy due to an inability to walk from pelvic instability. I had no friends where we lived as I hadn’t lived there very long. I was, therefore, unable to go to the kitchen and prepare food. I would have to sort of slither up the hall on my side to make it to the bathroom. I literally could not walk or stand. I was famished when he would get home. He was never able to remember that I was home and unable to meet my needs. One evening, he came home with food and ate in front of me. He didn’t ask how I was, talk to me, or even engage. He just sat there, glazed over, and ate his food while playing computer games. He rarely greeted me. I was so frustrated and angry. He looked at me with wide-eyed innocence and asked, “What’s wrong with you?” Obviously, nineteen years later I can see the flaws in my much younger self’s hidden expectations. Just call him and ask him to bring food for you, younger self! He can’t read your mind! The point I am making is that he was completely unaware of the “other” in almost all circumstances. Pregnant wife on bed rest unable to walk? He just didn’t get it or understand why that had anything to do with him or why he had any responsibility there. It bewildered him.
That is, however, a typical interaction. It has played out over and over again in different contexts over the years from him not visiting our baby and me in the hospital when she was thought to have meningitis to his bringing the Lord of The Rings trilogy to my labor and delivery because, “There will be a lot of waiting around.” It ranges from the comical to the spectacularly hurtful. For years and years, our daughters and I have observed this very obvious lack of emotional response and wondered why he didn’t like us. What had we done wrong? My oldest daughter has spent the last six months coming to me in tears over her feelings of loss where her father is concerned. She has wondered if something is wrong with her. She has asked the classic question:
“If he loved us, then why doesn’t he try?”
Last night, I sat on the edge of my bed and cried. I felt like I was crazy. It is so hard to describe what it feels like to be married to this. I told myself yesterday that if I could make myself more like him, then maybe it would be better. If I could remove all emotional desire from myself, then I would be able to do this. I actually asked God to make me like Spock. That has to be one of the weirder prayers to ascend. Like some warped psalm.
“Oh God, make me like Spock. Purge me of emotion. Oh my soul, shut the hell up so that only my brain will speak and my heart will sleep a thousand years.”
Poetic but not possible. I found a better thing to ask. I asked for a sense of being accepted and validated by someone. I felt so misunderstood. Like not one person understood the exact nature of what I was experiencing, and this was so isolating. This sense of isolation is intolerable to me. This morning, I found all this. I just stumbled across the word ‘alexithymia’ and AfDD. I then immediately found a paper about AfDD. Read this:
The lack of empathy in these relationships is one key to their impacts. A lack of empathetic attunement disables the individual’s ability to recognise, interpret and to verify subtle emotional signals expressed by intimates and contributes to an impoverishment of emotional interaction. The interaction becomes further compounded when the unverified partner or family member reacts negatively to feelings of being misunderstood or neglected. In this sense the affective deprivation experienced in such relationships refers to the deprivation of emotional-attunement, emotional validation, and intelligent emotional responding. To the extent that people look to their significant other for validation, the lack of such validation can corrode their sense of self and lead to a discouragement of self expression whereby large portions of the individual’s emotional repertoire become deleted from the relationship (Goleman, 1996b). In Asperger’s relationships this tendency to eradicate emotionality and take on Asperger’s characteristics has been labelled becoming “Aspergated” (Stanford, 2003). The failure to understand and validate legitimate emotional experiences or behaviours of the other typically creates or exacerbates negative emotional arousal in the invalidated individual/s, potentially leaving each member of the relationship displaying some measure of dysregulated affect (Fruzzetti, A.E., & Iverson, 2006). (Affective Deprivation Disorder: Does It Constitute A Relational Disorder?)
This phenomenon does not just apply to intimate relationships with certain people on the autism spectrum. This would apply to other contexts as well. I cannot tell you how validating this paragraph was for me, and I see just how important my being in DBT with my daughter was. I was there to learn to self-validate. The notion was introduced to me two years ago in David Schnarch’s landmark book The Passionate Marriage in which he says that self-validation is the key to differentiation in marriage and, thus, success particularly if there is gridlock. That struck a chord in me then. I learned how to self-validate in DBT. I learned on a much more practical level how to be mindful, how to suspend judgment, and how to be effective in relationships without sacrificing self-respect.
This has been my greatest downfall. I have slowly given up pieces of myself. I truly have deleted large pieces of my emotional repertoire in this relationship because of repeated rejection. How can one not do that? Knowing, however, that I am not the only person to experience this is tremendously validating. Knowing that there is a white paper written about this very dynamic tells me that there is a common experience out there, and common experience means that I’m not isolated. I am part of a group. I may not know anyone else who is experiencing this, but I now know that others know exactly what I know.
The interesting thing about alexithymia is this. It is a trait that can be comorbid with other psychiatric disorders:
Alexithymia is considered to be a personality trait that places individuals at risk for other medical and psychiatric disorders while reducing the likelihood that these individuals will respond to conventional treatments for the other conditions. Alexithymia is not classified as a mental disorder in the DSM-IV. It is a dimensional personality trait that varies in severity from person to person…
Alexithymia frequently co-occurs with other disorders. Research indicates that alexithymia overlaps with autism spectrum disorders. In a 2004 study using the TAS-20, 85% of the adults with ASD fell into the impaired category; almost half of the whole group fell into the severely impaired category. Among the normal adult control, only 17% was impaired; none of them severely. Fitzgerald & Bellgrove pointed out that, “Like alexithymia, Asperger’s syndrome is also characterised by core disturbances in speech and language and social relationships”. Hill & Berthoz agreed with Fitzgerald & Bellgrove (2006) and in response stated that “there is some form of overlap between alexithymia and ASDs”. They also pointed to studies that revealed impaired theory of mind skill in alexithymia, neuroanatomical evidence pointing to a shared etiology and similar social skills deficits. The exact nature of the overlap is uncertain. Alexithymic traits in AS may be linked to clinical depression or anxiety; the mediating factors are unknown and it is possible that alexithymia predisposes to anxiety.
There are many more psychiatric disorders that overlap with alexithymia. One study found that 41% of Vietnam War veterans with post-traumatic stress disorder were alexithymic. Other single study prevalence findings are 63% in anorexia nervosa, 56% in bulimia, 45% to 50% in major depressive disorder, 34% in panic disorder, 28% of social phobics, and 50% insubstance abusers. Alexithymia also occurs more frequently in individuals with acquired or traumatic brain injury.
Alexithymia is correlated with certain personality disorders,substance use disorders, some anxiety disorders, and sexual disorders, as well as certain physical illnesses, such ashypertension,inflammatory bowel disease, and functional dyspepsia. Alexithymia is further linked with disorders such as migraine headaches, lower back pain, irritable bowel syndrome, asthma, nausea, allergies, and fibromyalgia.
An inability to modulate emotions is a possibility in explaining why some alexithymics are prone to discharge tension arising from unpleasant emotional states through impulsive acts or compulsive behaviors such as binge eating, substance abuse, perversesexual behavior, or anorexia nervosa. The failure to regulate emotions cognitively might result in prolonged elevations of the autonomic nervous system (ANS) and neuroendocrine systems which can lead to somatic diseases. Alexithymics also show a limited ability to experience positive emotions leading Krystal (1988) and Sifneos (1987) to describe many of these individuals as anhedonic. (online source)
I’ve discussed personality disorders at length on this blog, but I’ve never discussed alexithymia. I have never had a therapist discuss this with me either. Many of us leave families where there has been abuse or trauma with symptoms of AfDD, but those clusters of symptoms have never been named. It’s all been lumped together under depression, or anxiety, or PTSD, or “Stop whining and get over it.” I would like you to read this:
Emotional reciprocity, love and belonging are essential human needs, if these needs are not being met and the reason is not understood, then mental and physical health may be affected. (Maxine Aston)
Yesterday, I asked someone if it was normal to want reciprocity and belonging in a marriage. I didn’t know if that was a normal thing to want. I felt extremely confused. Was it something that was bad to want? Reading this statement this morning has been a powerful validation for me. It has been the plumb line that I have needed so that I can see where long-term exposure to wrong thinking and unhealthy behaviors and beliefs have landed me. I also asked these questions when I was emerging from my family of origin. You will find yourself on shaky ground if you are in a relationship with someone with a Cluster B personality disorder.
If any of this rings a bell for you, I encourage you to look through the resources at the end of this post. One of my takeaways has been that I didn’t get here riding his dysfunctional coat tails as it were. I helped. I participated in creating the current atmosphere, and I will be the one to rebuild my own happiness. It has always been this way. Knowing, however, that my experiences have names is powerful. Knowing that what I want is legitimate is equally powerful.
Validation is healing. I hope I have provided some for you should you need it.
Post script: This post has numerous comments some of which are very brave and personal. I would ask that people who comment refrain from judgment and psychoanalysis. The comment section is a place to share thoughts, ideas, and common experiences. It is not a place to “concern shame”, judge, and go on the offensive out of a defensive posture. Thank you for civil and kind discourse. Remember, everyone is trying to heal. So, let’s contribute to that process–not hinder it.
Endnote: As of 2016, I have been separated from my husband; we are divorcing. An excellent resource is Lundy Bancroft’s book Should I Stay or Should I Go: A Guide to Knowing if Your Relationship Can–and Should–Be Saved.
Related blog post: Should I Stay or Should I Go?
Please read: Epilogue: Five and a Half Years Later for an update to this post as of June 2020.