The emotional meaning behind physical symptoms: decoding the bodily expression and transmission of heart worries in heart warriors and their parents
THE INNER, EMOTIONAL WORLD OF THE CHILD WITH CHD
AUSTIN E. WILMOT, M.S.W., L.C.S.W.
Physical symptoms are frequently thought of only as physical problems, when it is, often, an issue of emotional and psychological origin. People tend not to think about calling a psychotherapist because, for some, it is “not nice” to go to a therapist and still not as socially acceptable by many people who often view it as a sign of weakness. Going to a therapist says that there is something wrong in a way that going to a medical doctor does not. People have trouble when you label something as emotional or having to do with feelings. In fact, some people go to such great lengths to distract from their inner, emotional world that they’d rather pursue surgery than talking to a therapist over time about their feelings (e.g., a person struggling with weight deciding to have an operation that will make their stomach smaller versus seeing a psychiatrist or therapist to make their emotional problems smaller). Surgery virtually never addresses issues on the emotional level, instead creating more problems, issues on an emotional level, especially when the surgery has not “fixed” the underlying emotional problems.
In this article, we will consider how the following examples of actual social media posts on a variety of pages related to CHD highlight common patterns of thinking in the CHD community and what can be gained from the consideration of physical symptoms as meaningful communications of underlying emotional problems.
Target organs of anxiety
The body is a place where emotional feelings manifest. Anxiety is a signal that feelings are trying to come up and find expression. The idea that that there are somatic components to emotional states is not a new one, but one that is often overlooked. The heart, bladder, bowels and skin (e.g., blushing, sweating, getting cold) are some examples of body organs where anxiety can be displayed. If you are burdened by anxiety, these are some of the organ systems that will indicate it. Think for a moment about your own experiences: If you are frightened, you get tachycardia—your heart beats faster. If you are feeling calm, you will have your normal rhythm. If you are too anxious, you begin to tremble, your handwriting changes—you might begin to shake and develop a tremor. If you are very frightened, you might lose control of your bladder and/or bowels, or you might hold in and retain. As an example, some children, out of a need to control everything—living in a place where they can control everything—control their bowels and become constipated. Further, urinary control, while something that is learned, is easily unlearned under the burden of increased anxiety. Bedwetting (enuresis) and urinary urgency are examples of this. Sexual organs, as well, are target organs of anxiety (e.g., anxiety may lead to difficulty with erection or lubrication). Many systems can be the end organs that may manifest a person’s fright, anxiety and excitement.
In order for most of our organs to function adequately, they need to be relatively anxiety-free. When a person has certain symptoms, we have to ask if there is a problem with the actual way in which the organ works or if there are emotional factors that are entered into it. For example, let us consider the intersection of hunger and emotions. In the situation of obesity, a person does not need all the food being consumed, but they do “need” it for emotional reasons. The person eats more than is calorically needed whether their body needs it or not. In most cases, the body does not need it, so it is stored as fat, which has an impact on target organs. We always have to take into account the emotional status of the individual, especially when there is a physical problem and physical stress. This is not something that many medical doctors are trained or interested in doing. While it makes sense not to advise about matters in which a person lacks the required training, they should not disparage people’s interest in understanding their emotional side better.
Decoding physical symptoms as they are words of a nonverbal system
As we have elaborated above, anxiety and emotions affect the body. The capacity a person has for verbalizing emotions, towards the task of recognizing their own feelings to be heard and understood, has an important bearing on whether emotions take a turn towards expression through the body (nonverbally with physical symptoms as their signal) versus expression through words and talking them out. If the verbal system sufficiently fails to process emotion, the sum of these unexpressed and often unrecognized effects can lead to psychosomatic forms of illness (e.g., asthma, stomach ulcers, colitis, hypertension and arthritis). Therefore, physical symptoms, as well as action [e.g., obsessive compulsive handwashing or constantly checking one’s pulse, temperature or oxygen level], can be substitutes for thought—ways “through which one disperses emotion rather than thinking about the precipitating event and the feelings connected to it” (McDougall, 1989, p. 15). We must now consider how heart worries in children with CHD might manifest in the body (and, also, in the bodies and minds of parents). Let us think about the potential for emotional meaning behind these physical symptoms and concerns.
Anal Issues
Social Media Post #1
“Anyone with older kiddos (8 years+) with COA have frequent urination and nighttime bed wetting issues? We saw a urologist last year the day after we got my son’s heart DX of severe Hypoplastic aortic arch, ASD, and severe COA. He had open heart surgery last April to repair and the daytime accidents have improved a lot (he says he can now feel when he has to go) but it is still very frequent. I am wondering if anyone else has had to deal with this. If so, are there any interventions that you have requested?”
Here, the complaint of frequent urination and nighttime bedwetting with an 8+-year-old child is raised and parents polled regarding “interventions that…[they] have requested” for their similarly cardiac-diagnosed children. The fact that this post is coming through on a CHD forum indicates something about the parent linking a heart issue with a pee issue—a connection that we cannot fully understand (or, really, accept) without more information. The tendency is to examine what is tangible—namely the urinary system, however, it was found to be O.K. We need to know what the 8-year-old thinks about his enuresis problem. In addition, what does this child think about the surgery? We know what the parent knows about the heart defect, the surgery and urinary problem. What we don’t know is what the 8-year-old thinks—both before surgery and after surgery. We don’t know what the child thinks about his urinary issue.
It is unusual for a child of 8+ years to have such urinary issues. It is also unusual for such problems to be getting attention so late in his development. It makes us want to question the parents and underscore our need for a fuller history. It also makes us question the developmental level of the child versus the chronological age, causing us to wonder about the state of the child’s inner, emotional world. Although there is much information lacking in this post, the parent is indicating physical symptoms in the target organ of the bladder, alongside information about having sought consultation from a urologist and not remarking on any findings arising out of that meeting. That something continues to perplex these parents with their child without a urology consult leading them to comment on any physical findings, points us to thinking of the child’s physical symptoms perhaps as a result of anxiety—symptoms carrying emotional meaning that may or may not relate to anything heart related.
The fact is that we do not know a lot of information. However, the seeking of “interventions” by this parent feels like a need to “act”—like surgery—and leads to looking for physical reasons (as with the heart—what is mechanically wrong with the urinary apparatus?). This is in contrast to a need to understand as would occur with a therapist—an intervention of talking and getting to the core of an emotional problem rather than a physical one. This, being, an intervention of finding out what is going on inside the inner, emotional world of the child versus the plumbing of their heart or bladder. Assuming this was not done, we might wonder why—what are the parents anxious about looking at or fear feeling by going to someone focused on understanding feelings? Maybe it is ignorance, as well. One “intervention” that a therapist may perform pertains to drawings. A therapist might have the child draw what they are feeling when they have to go to the bathroom, as well as draw what they believe is going on in their body.
We could ask the child to draw:
1. Draw your heart before surgery and after surgery with labels for the functions of what each part does.
2. Draw your digestive system—mouth to exit.
3. Draw your urine system—where it starts and where it ends.
We might ask the child:
1. Where does urine come from?
2. Why does it get thrown away?
3. How do you control urine flow?
4. Draw—where is the controller? Who owns it? Who decides how it works?
Elucidating and understanding the fantasy life of a child is critical to uncovering the nature of emotional problems as signaled by physical symptoms. We want to look at what we call the “fantasy life” of the child because it often represents what he believes about how his urinary system functions.
Social Media Post #2
“We have struggled with nighttime wetting and daytime frequency and urgency. My son is almost 11 and I’m happy to say he is finally growing out of it, although there are still some frequency issues that I think are mostly related to anxiety. I consulted multiple GPs and urologists, and asked our cardiologists as well, and no one ever thought it was something that should be treated, and that he would eventually grow out of it. Frustrating, but that’s been our experience.”
In this post, there is an actual reference to “anxiety” and the serious, longstanding issue of “nighttime wetting and daytime frequency and urgency”. This post highlights the troubling reality that many medical doctors suggest that this is not a treatable issue and is something to just “grow out” of—in other words, “do nothing”. It reminds us that many medical doctors do not know how to approach the somatic components of emotional issues—it is not in their realm. It is also troubling that a parent would know enough to consider the impact of “anxiety”, but, as far as the post goes, not convey any consideration to seeing an actual specialist of anxiety—a child therapist or child psychiatrist. There is such ease in seeking out a urologist and cardiologist for those specific concerns, but a different kind of difficulty in seeking the help of a therapist—someone specializing in emotional problems. Perhaps the parents are anxious about what feelings could be connected to their child’s anxiety. Perhaps a child’s heart worries worry the parents—contributing to avoidance of feelings in the family and an attitude of letting him “grow out of it”? We can only know with more information. Some think if you are seeing a mental health therapist it means “you are crazy”.
An interesting commonality between both posts is the ongoing complaint of frequency issues. Urinary frequency issues may be accompanied by an urgent sensation of a need to void. We might ask about the timing of these issues and if there are times when it does not occur or when it occurs more frequently. It would be helpful to know when symptoms started, as well. We understand many genitourinary symptoms as involving psychological factors.
Considering the issue of urinary frequency through a psychoanalytic lense, we are offered the possibility of seeing how such a type of symptom—generating both a frequent and pressing interruption—could serve a function of distracting from other frequent and pressing feelings or concerns, like heart worries and other anxieties about one’s bodily plumbing or other matters for both child and parent. A psychotherapist might explore this issue with inquiry of the child as follows in order to begin talking about the actions, inactions and controls surrounding sleep:
1. What keeps your eyes closed when you are sleeping?
2. Do you move during sleep? How do you know?
3. Why don’t you have a bowel movement when you are asleep—or fall off your bed?
4. Why do you move when asleep?
While symptoms have origins and meanings, the results of the symptoms, even with those who have identical symptoms, may have very different emotional causes. There are multiple meanings and reasons for this symptom—each person is unique.
Oral Issues
Social Media Post #1
I’ve had bad luck with the cardiologists that my son has had. I need someone who will connect with him and has time for my questions. He is having feeding issues and they can’t seem to have any answers because according to them his heart is functioning fine. He has BAV and ASD and really bad reflux he has NG tube because he refuses or can’t physically finish his bottle….
Here, a parent raises the concern of feeding issues with their baby. To begin, I would like to highlight the parent’s request embedded in the post: “I need someone who will connect with him and has time for my questions”. This is a very interesting remark to make as it shows that something about connection and bonding is on the parent’s mind and the need for parental support and understanding.
Additionally, this parent seems upset with how a cardiologist is not addressing her concerns, relating that the baby’s heart function is fine. However, it is not a mechanical issue to be solved by an NG tube. Babies are most easily traumatized. They have feelings and emotions too, as small as they are. Like previously, we have more questions of this parent:
1. When you say he can’t physically finish his bottle, how much does he finish?
2. How did you decide on breast versus bottle? If bottle, why did you decide not to breastfeed?
3. Who did the feeding in the hospital and how?
4. When and why was the NG tube introduced?
5. To what degree were you involved—your presence felt—in the hospital?
In complaining of “bad luck” with cardiologists, the mother may really be saying something of how she feels herself to have had “bad luck” with having a baby with heart problems and further feels herself to be having “bad luck” in connecting and bonding with her baby, as occurs through feeding. That it is not a mechanical issue a cardiologist can address or has answers about does little to alleviate the anxiety the mother may feel on a variety of levels about this new life she has brought into the world.
Firstly, the heart issues may not have anything to do with the feeding issues—as she relates, the cardiologists said his heart was functioning fine. This mother may be very upset that she doesn’t have a normal baby—that she has a “defective” baby—and she may be afraid of making a mistake with the baby causing her to pull away or act in a way that feeds the feeding issue. This is a universal experience—many mothers (and fathers) are afraid of dealing with the baby because it is fragile, easily broken, easily dropped and is at his most vulnerable point in his life because he is absolutely dependent on others. Even though one hasn’t gone to college on “baby feeding 101”, you have to know how to feed the baby—to trust that you’re able to feed the baby adequately. Some babies are voracious and just suck away, sucking the breast dry and do very well. Others may suck a little and then fall asleep. One must attend to these differences—waking him up, saying “hey, you’re not done!”. These can be hard babies to feed because you have to keep them at their job—that the baby has the job of emptying the breast or emptying the bottle.
To a baby, food = mother. Therefore, a feeding issue is primarily concerned about the bond between mother and baby—the relationship between mother and baby. The way in which the mother holds the baby in mind as well as in her arms is important for us to understand. We might further ask this mother:
1. Are you afraid of your baby? Do you regard the baby as “fragile” or “easily broken”?
2. What are you afraid of when you are with your baby or when you are feeding your baby?
3. What goes through your mind when you are feeding your baby?
Many mothers have fears that impinge on the development of a secure mother-infant attachment, especially when such attachment has already been interrupted by a forced separation due to a hospital stay or other issues such as surgery and intensive care. Fears of baby may include fears of baby destroying their body, sucking them dry, hurting them or biting them. Breasts are tender—invariably, babies chomp down on the breast, and even without teeth, their gums are hard and it can hurt. It is baby’s first learning experience—you bite the breast and the breast is withdrawn. The mother will take the baby off the breast and then try again—“you bite me, I’ll take you off”. It doesn’t take long for the baby to get the message.
One can ask: What do you intend to do when your baby is born? How will you feed him and why do you choose that method? How did you make that choice? What factors did you take into account? We can ask these questions to make an inquiry as to whether there might be psychological impingements on the feeding. Feeding can be a very close relationship, but it is not a verbal one—you can’t talk this out. You have to deal with the baby and the baby’s needs. Mother also has her own needs. Having a full breast is painful and uncomfortable. When a baby empties the breast, it feels better. And when she’s made a contribution to the baby, there can be a felt sense of having cared for the baby. This develops the mother-infant bond.
Breast feeding is also sexually stimulating—it is not just for the baby to feed. There is a sense of relief for the mother. A full breast feels like one is carrying a heavy burden and you feel better once the baby has sucked it dry—everybody profits.
Breast feeding can offer “good food” well presented, but a lot of women have never done this. It may not have been something a family does. She may not have the confidence of having enough or that the baby will know what to do or that she will know what to do. It is like a marriage—two people meet and they have to get to know each other.
Hospitals introduce a level of complexity into the mother-infant dyad, which will be explored further in the next post. However, it is brought up here because the NG tube is a hospital addition to the equation. This is something that we would want to understand more about. Ultimately, an NG tube operates outside the workings of the mother-baby bond—offering the food = mother equation in a way that is not relational.
Social Media Post #2
My grandson, who lives with me is 8 months old and barely weighs 14 lbs. He’s doing great with the bottle but refuses more than 3-4 oz and any food no matter how thin causes vomiting. They can’t find a medical reason for this. Swallow test came back fine. He was 6lb 14 oz at birth. OH surgery at 7 days, inpatient for 3 weeks after surgery with rhythm issues. His COA was pretty severe and his arch had to be reconstructed, large VSD patched. He came home on a feeding tube, but we were able to remove that after about 4 weeks. His pediatrician wants us to push food because he needs the calories but that seems to make feeding worse. Besides being small and a tiny bit delayed he’s otherwise healthy and last check his repair looks great. Ideas for getting a so, so eater to eat more?
In this post, a grandmother is writing in. Let us think about the author before we proceed.
Grandmothers can be very helpful. Grandmothers can also be intrusive. Many grandmothers who says, “I’m experienced, you’re not…I’ll change the diaper”, render the mother an observer while the grandmother lays claim to the baby. Many grandmothers also say to the daughter or daughter-in-law, “you watch me”, but it is not so that the mother will learn—there is a message that the mother is dumb and stupid. A grandmother may be jealous of the daughter or the daughter-in-law because she is sexually active, has just been pregnant, she is making babies and the fact that this is her baby. The grandmother may experience herself as out of the picture—excluded—feeling as though she has no position there unless she robs the cradle. Because a grandmother wrote this post, we are curious about where the mother is. Why is the mother not writing in? Feeding is a relationship with mother, and so we read this post as a concern for the nature of the relationship between mother and baby. To suggest an idea for the grandmother’s question “for getting a so, so eater to eat more”, however, does relate to playing within that mother-baby relationship: Have him feed his mother small items he can pick up and insert into mother’s mouth. It is a game: he feeds mother, then mother feeds him the same thing she just ate—it’s a game, not a contest.
We might ask more question, however:
1. Who did the feeding in the hospital?
2. How long did a feeding take?
3. Was the baby held or was it a propped bottle?
4. Did the mother see him during those three weeks in the hospital after surgery?
a. If yes, to what extent did mother help with the feedings, the tubes, changing diapers and so on?
b. Does the baby play/have “toys” that are for the mouth—teething, sucking, etc.? This baby may never have sucked on anything.
The question of who did the feeding in the hospital is important as it relates to the inclusion or exclusion of the mother in the early bonding process—remembering that mother = food to the infant. If we imagine that it was a nurse, then that is a lot of time without person to person interaction with mother. We wonder about the extent of involvement—because just being there and watching is not a relationship—is this what is being symbolized by the grandmother writing in? To what degree was the mother’s presence felt? There are hospitals where there is less value placed on securing parental involvement. Nurses may feel they can be better and that leaves the mother out, learning nothing from the experience. Even with limitations, mother can still be a presence by being visually and auditorily active. Some hospitals have a tendency to convey an attitude that “we know, you don’t—you will mess up what we have done”, effectively replacing mother or leaving mother ill prepared or displaced from connection with baby. In other words, there is a tendency for hospitals to rob you of your child—like with some grandmothers. While they might be correct in having more knowledge and experience, they are not the mother and cannot be. Mother may be left in a very awkward and uneducated position at a time when mother really needs to be educated on how to give this special care to her young baby.
Somatic Complaints
Social Media Post #1
Is it normal for those with bicuspid aortic valve to get migraines?? My son has BAV and he has started getting migraines this year.
In this short post, the concern of migraines is raised. One would first wonder who made the diagnosis of migraines? Is this self-diagnosed or was an actual professional consulted? It seems this parent is looking for reassurance that a physical symptom of migraines is normal—it is not. That a cardiac problem is a somatic concern, may lead the parent to thinking that this too is a mechanical thing, with, perhaps, such a solution. For this person, we might ask about what he thinks brings it on:
1. Tell me what was going on in your life the day you got your migraine?
a. You might get a very sketchy answer which will be no answer at all. This leads to #2.
2. We might issue an assignment: The next time you get a migraine, start writing about what has happened and how you felt (emotionally) about it in the 24 hours before you got the migraine.
Generally speaking, migraines are associated with unexpressed anger. The task of understanding this person’s history and what anxieties might give someone a migraine is in the realm of psychotherapy.
Social Media Post #2
So this is far reaching for me but I just want to be sure. My newly 3yr old had his repair done at 5ms old, he has Shones. His last check was in February where everything was okay. He has recently been complaining that his belly hurts. It seems pretty random and after he rests for a little bit he is back to playing. I cant figure out what it could be. Could that be a symptom that something is off with his heart?
Here, a parent worries that her three-year-old complaining that his belly hurts might mean something is off with his heart. Assuming he is “okay” from a cardiac perspective (as written), what does it mean for this child to be complaining about his belly hurting? What does the parent mean by saying “he is back to playing”—playing what exactly? What does this child think is wrong when he says his belly hurts? What does he think is going on inside his belly? We might ask this child to draw (when possible, given age level):
1. Draw a picture of a belly.
2. Draw a picture of a belly that does not hurt.
3. Draw a picture of a belly that hurts.
4. Draw a picture of your belly.
5. Draw a picture of what you think is going on inside your belly when it hurts.
6. Draw a picture of the inside of your body.
7. Draw a picture of a heart.
8. Draw a picture of your heart.
The inside of our person is a mystery to most people. Most people know there is a stomach, heart, lungs, something called bowels and maybe kidneys. Many do not know too much about the function of these organs or what they have to do to make them function well. This leaves space, for instance, for a child’s fantasies. A three-year-old has fantasies that fill in the gaps in their knowledge. A three-year-old’s ability to communicate by drawings is just beginning and play is accessible to some extent as a meaningful mode of exploring their inner, emotional world. We would wonder if this budding concern about belly pain may be the only way the child can begin to convey an underlying sense that something is wrong inside. It would be important for us to understand the extent to which this child’s heart problems and surgery has been talked about with him and by whom. What this parent “can’t figure out” is that this is an emotional problem and this child knows that something is wrong inside them and likely doesn’t know what to do with that and those accompanying fantasies. This is something a therapist would help address.
Social Media Post #3
Since you guys actually respond im gonna go ahead and fire on more question off. So I have anxiety issues and am pretty paranoid as it is, but do any of your other monsters get heart palps and shortness of breath and stuff like that. Cause ill get em and freak out. Thinkin this is it, my time has arrived. I even sometimes to the er and they’re like welp…you’re the healthiest human on earth don’t know what to tell ya. So do you guys ever get that or is that maybe part of my anxiety issues rather than heart issue?
In this post, a teenager or young adult with CHD is wondering if their physical symptoms are shared by others or if it is an anxiety issue of their own. It is interesting that it is worded as either others sharing these physical symptoms or it being an anxiety issue of one’s own—as though the anxiety issue is not shared by others. This person’s anxiety is not helped by their ER visits as this is not a physical problem—the ER feedback of “you’re the healthiest human on earth” does not touch the inner, emotional turmoil this person seems to be in. A therapist would help explore a full history of this person and understand the anxiety as a signal of feelings in need of expression that have rather been seeping through channels of nonverbal physical symptoms—like an episode of panic, for instance.
A note about parental worry and anxiety
Social Media Post #1
Does anyone’s child with COA have ears pierced? She’s 7 now and I’ve always said no due to risk of endocarditis but curious how many have gone ahead if any?
This post is from an anxious parent in regards to ear piercing. It is interesting that such a concern arises, given the likely answer to the following blunt question: For one, can she go to the dentist? The answer: Of course! So, then, what is the threat of one’s daughter getting her ears pierced? And, if she cuts her nails, will her fingers fall off? The concern of this parent has nothing to do with the risk of endocarditis. What this parent is afraid of is the growing sexuality of her daughter.
Women in the course of their life often get “pierced” as part of their sexuality. They get their hymens broken—a kind of piercing. A baby comes out of the uterus—a kind of piercing. Here is a mother having a bit of difficulty with preparing for a little blood and a little pain, just like most virgins would experience. I think this is most accurate, but for many women to think of the sexuality of their 7-year-old may be too much to assimilate—maybe too early. For most mothers, daughter’s sexuality begins with menstruation (and pads for menses—i.e., no intravaginal tampons). Psychoanalytically, we also understand that the growing sexuality of her daughter then makes her a “competitor”. Some mothers have difficulty with this—a sense of feeling in competition with one’s daughter—feeling as though she will be or is more attractive, etc. While CHD already often comes with various restrictions on activity, it is noteworthy that this mother’s own anxiety has contributed to the addition of an unwarranted and unnecessary restriction on her daughter, on top of other restrictions that may already be in place. A therapist can help a parent to examine whether their own anxiety may be contributing to ways of thinking and acting that impinge on the healthy emotional development of their child.
Bibliography
McDougall, J. Theaters of the Body. Norton, 1989.