Bromberg, in his seminal paper "Speak That I May See You," (1998) wrote of the intersubjective conflict between the dissociative function that has the capacity to fragment words and various self-states from emotional experiences in trauma (in particular, but also in everyday conflictual experiences) and the demand of the psychoanalytic space for a mutually accepting and understandable languaging of what haunts and often shames the patient. Referring both to Socrates and Freud, Bromberg cites the demand of the listener for the speaker to “speak, that I may see the speaker hidden in his words. Speak everything that comes to mind, and I will discover the person you wish to hide.” (Bromberg, 1998, p. 246), He beautifully elaborates about the nature of trauma and the psyche's need to extricate meaning from experience in order to not consciously function in a perpetually fragmented, or even what can be felt to be a dangerous state. Bromberg expounds more profoundly, more complexly and in more analytically contextualized language than suits the scope of this current piece of writing, but his ideas resonate and relate, nonetheless.

What therapeutic treatment can provide is a "safe" space to integrate traumatic experiences that may be felt, but which have no language, either due to the age of the person when the trauma occurs (e.g., a pre verbal child), or the advent of remarkable defenses that relocate a person, so to speak, to a preverbal or other self-state for protection...after all, isn't that what our defenses are for: to protect? So a patient can choose to speak to someone who wants to listen, to someone with an integrative function, to someone who can provide language, understanding, compassion, and validation for what had been unspeakable. This is a risky proposition for most. And vis-a-vis this speaking, clarifying, labeling, and giving meaning to what had been too terrifying or difficult to previously give meaning to, healing and integration can become possible. There are so many pieces of this process that are challenging for both speaker (patient) and listener (therapist), one of which is the patient's fear of not being understood sometimes simultaneous with the therapist's struggle with understanding. The patient ostensibly wants to be understood (I say "ostensibly" since it is more than likely that there is such anticipatory fear of not being understood and/or terror felt at taking the risk of speaking what has been unspeakable or confusing and not knowing what lies ahead) and the therapist wants to know...maybe needs to know. Needs because, how else can we help if we don't know what happened? And putting experience into words is the way we communicate in relationships; without that, we can remain in state of isolation, confusion, and feeling unknown. 

When I work with patients who have MS, I view the experience from a trauma model of care. In fact, I see being diagnosed with any chronic illness to be traumatizing, potentially in ongoing ways. One aspect of the MS experience that I hear over and over again in my practice and in my hospital work speaks strongly with this idea of wording what seems to not have words, specifically in regards to symptom experiences. Please know that I am not in any way suggesting that finding words for symptoms is part of a dissociative struggle; of course much dissociation goes on in the life of MS patients, but the scope of this discussion is more about the issue of wanting to speak and be understood (patient) and wanting to know the experience (doctor), most often resulting in the patient not feeling understood and the doctor taking for granted an understanding of the symptom specifics that often are vague, at best. As far as treatment protocol goes, in many respects, to patients, it seems to matter little for the doctor to understand entirely what the patient is contending with; often for the physician, if a patient is having an exacerbation or a pseudo-exacerbation, it frequently comes down to a decision between a steroid script or nothing at all, pain medication sometimes, and anxiolytics other times. Temporary palliatives, but not understanding. This often leaves patients feeling placated, frustrated and as if their treaters have no real idea (or sometimes even interest) in what they are going through.

Part of the difficulty, as I see and hear it, is that the physical symptoms of MS feel to not fit in any known languaged construct that is regularly used or understood...or to them, it sounds crazy. In fact, many patients, prior to finding a knowledgeable physician who could diagnose MS contended with many naive physicians who, upon hearing these "strange" symptoms would tell them "it's all in your head." It's as if the disease has a language all it's own, and many feel that you have to have it to know what it means. This often is why patients find more comfort in speaking about their MS to other MS patients than to friends or family members or even doctors...being understood without having to explain, much like the preverbal child whose mother knows the meaning of each nuanced cry...how comforting to be known, especially with a disease like MS that carries with it so many unknowns.

Another factor that many MS patients struggle with and feed their reluctance to language their experiences to those who might not understand is that many of MS’s symptoms are hidden, and unnoticeable to the casual onlooker. “But you look so good,” has become a cursed phrase for many MS patients – something they hear so often not as a compliment, but as an invalidation of what sufferings are happening beyond what the naked eye can see. They often report feeling as if they are not believed when describing what they are feeling because the evidence of their pain or “scar” is not something that is externally visible. I assure you that such repeated reactions do not inure people with MS to feel that telling someone of their symptoms is a safe and reasonable thing to do. 

These are some of the symptom experiences I've heard from patients: "it feels like I have shocks going up and down my arm," "my whole body is exhausted and I just slept 12 hours." "it feels like there's a furnace in my leg that turns on and off and I don't know when it will end," "I feel this drawing feeling in my leg," "I feel like my spine is pulling apart," "my foot just stops working," "I can't feel my vagina...I know it's there, but when I pee, I can't feel where the pee is coming from," "I didn't know I had to go to the bathroom and, before I knew it, I had gone all over myself and didn't even feel it."  I suppose all of these, written in words that are known to all of us make sense, but none were said with ease, all with hesitation and most with shame. Why shame? As with most traumas, the experience of having someone bear witness to something that feels out of our control, forced upon us, and upsetting to speak of, can feel shameful and often perceived as not being worth it to even speak of in the first place.

So is MS really unwordable, is it not welcomed to be heard or, like other traumas, does it just feel too shameful to word?

Bromberg, P. (1998). "Speak That I May See You." In Standing in the Spaces: Essays on Clinical Process, Trauma, & Dissociation. Hillsdale, NJ. The Analytic Press, pp. 241-266.