Delusion in the Service of the Ego

I'm considering the title above. Ifwe look at delusion as a defense (versus a diagnostic criterion), then ofcourse it would be operating in the service of the ego. So what's my need toemphasize it as a title to this entry? I think it's my intellectualized way ofdefending against MY difficulty in tolerating what feels like a recentand be made to  "disappear" through means of certain diets and homeopathic remedies, and the occasional promise from a medical professional. Healed completely. Well, why wouldn't someone with MS want to believe that? It sounds wonderful. Hopeful. Makes one think things can return to normal, the old pre-MS versus the new, not fully integrated “I have MS” normal.

Someone I met recently, who is studying to be a homeopath, wanted to know if I work to help my patients accept their MS, versus encouraging their hope or belief (like hers) that MS can be cured through diet and herbal remedies. I didn't know how to respond, given that I just met this woman and that it didn't seem like the best context (a Shiva house) to debate her aforementioned beliefs and her additional conviction that Lyme's Disease causes MS.  Is the last suggestion that relevant to the main point I am making? Not directly, but I mention it because, to me, it’s an example of connections being made that seem rather random, done in the service of ego soothing. This, versus tolerating the information that is real and valid, based on actual research and scientific inquiry. Information, that to many, betrays hope. For example, having a conviction that the Paleo diet CAN cure MS engenders hope, and I wonder if that is a problem to be challenged? This is one of my quandaries. I tend to operate around this issue with the philosophy of “if it’s not hurting you, and it’s helping you feel like you have some control over your disease, when otherwise you do not, go ahead.” And the Paleo diet actually is quite healthy, so how do I argue against one engaging in it? It’s not the incorporating of the diet that’s the issue; it’s the belief that this diet IS
the MS cure that has me concerned. I believe very strongly in the way I practice as a psychologist.

I also believe and trust the physicians and other MS experts whose work and research have produced as clear an understanding as is currently possible about how MS functions and how it can be treated...and how it cannot be cured...yet (or maybe ever). So when patients come to session asserting that certain diets (Eg., Paleo, Swank) are KNOWN to eradicate all that is MS, or worse, hearing from a medical professional promises, yes, promises that this professional WILL find a cure for MS, I am left with my mouth horror-struck (no one ever said I have a poker face)  and feeling flummoxed as to what to say. I feel awash in conflict. On the one hand, I feel it's my responsibility to provide space for reality testing and grounding. On the other hand, I can see the glint of hope in my patients' faces, and I believe having hope is immensely constructive in managing the uncertainty inherit in an MS diagnosis. But, just stated to me far more articulately than I will reiterate, one can support a patient's need and desire for hope, but not if the hope is derived from false claims and inaccurate information. Ergo, it would seem my job would be to encourage the wish for something better, AND disempower the delusion of a cure, since it doesn't truly service the ego if its based on fallacies, right?


 

Managing Multiple Sclerosis: How an MS Diagnosis Affects More Than Just the Patient

Originally posted on September 27, 2013 by MSAA

When thinking about the idea of “managing MS,” more than likely you immediately think about the patient and how he/she is dealing with, incorporating, accommodating to, accepting, grieving…and having many other reactive and thoughtful coping styles for getting used to being diagnosed with multiple sclerosis. Certainly in my work, this is something that I focus on regularly with my patients: how to help them manage their MS. Whatever that might mean for the individual.

But managing MS is NOT JUST ABOUT THE PATIENT. It is simultaneously about the microsystem surrounding the patient, including partners and other family members. We can consider that “managing MS” needs to be looked at more globally, relationally and more systemically than just individually. That the trauma of MS diagnosis has many fingers of whom is affected and therefore who has to manage it.

My work more often than not involves discussions about my patients’ respective relationships with the people in their lives, particularly if a partner is involved and always when there is no partner, but the wish for one remains. Many relational areas get covered in sessions, but thematically, I hear over and over again the feeling of or actual act of being rejected; the reasons given are either directly stated to be because of the patient’s MS or indirectly communicated that MS has interfered so substantially in the relationship, the situation is no longer viable. Then there are the rejections that occur in which the partner/family member/friend remains as a figure in the
patient’s life, but creates enormous distance between themselves and the patient, with the space between them being filled with uncertainty, anger, resentment, loss, sadness, disconnection and the like…feelings felt by both patient and their “people.”

And while I absolutely empathize with patients who feel rejected/are rejected by their “people,” I also have great empathy for the “people,” who are the ones patients rely on, who become the caretakers, who are tasked with increased responsibilities they may not be prepared for nor wished for when they got involved with said-patient. They didn’t sign up for this! Managing MS is NOT just about the patient, as I said. I work with people whose partners have had very strong reactions after a diagnosis of MS was given: some may reduce or stop sexual intimacy; or become increasingly snappish and intolerant when the patient struggles to do tasks at home that were previously rote and done with little effort, like removing dishes from the dinner table and bringing them to the sink; increasingly spending more time out of the house and away from the relationship, finding the patient’s symptoms too difficult to tolerate and too
frustrating to face regularly; in some cases a partner may even leave thepatient after diagnosis never to be seen from or heard from again. In one case
a partner telling the patient that he needed to break up because he could not deal with her MS, even though she was asymptomatic and, in a meeting with the doctor (requested by this boyfriend), the doctor presented a very optimistic picture of the patient’s likely path with her MS. That boyfriend apparently did not want to pay attention. He was mostly concerned that the patient would end up in a wheelchair and he would have to take care of her, which he did not wantt o do anytime soon.

In all of these examples people are reacting to a situation (MS diagnosis and its sequelae) in ways that speak to how awful and traumatized they are feeling about what is going on. These are not the only examples I have; there are ones in which partners step up, learn about MS, specifically their partner’s MS, where they are supportive in loving, generous ways, when they actively participate in their partner’s treatments and step into not out of what is happening. But even those “angels” have to face and deal with the trauma of being with someone with a progressive, chronic illness. No one is immune from the impact of that. I frequently see or hear about relational pathology as couples/family members adapt to an MS diagnosis. But, I also see that many of
the partners or family members willingly participate in treatment or get their own treatment or even join a group with others who have a person in their life with MS and are having difficulty managing what the diagnosis means to them.  All of these latter tactics can be very constructive…and all are a process, as is managing MS…it IS a process that is evolving and ever-changing and one that needs to be open to the idea that it’s NOT JUST ABOUT THE PATIENT.

This entry was posted in Caregiving & Multiple Sclerosis, Multiple Sclerosis Association of America, Multiple Sclerosis Tips, Uncategorized, Well-being & Multiple Sclerosis and tagged caregiving, caring for a loved one with ms, caring for someone with MS, caring for someone with multiple sclerosis, effects of MS, effects of multiple sclerosis, Gayle Lewis, ms, ms diagnosis, MS psychologist, MS symptoms, multiple sclerosis, multiple sclerosis diagnosis, multiple sclerosis psychologist, multiple sclerosis symptoms, multiple sclerosis treatment, psychologist by MSAA. Bookmark the permalink.

 

The Journey or the Pace?

“What was your time?” “How long did it take you?”

I finished my first marathon last weekend. The New York City Marathon. A big deal. A HUGE feat. Just to finish, since many do not AND most don’t even try. But it would seem that, in my small world at least, it’s not as important that I finished, but more so in what time. Extraordinarily to me is that I am mostly asked for my finishing time by people who themselves are not runners. People, whom when I was training would claim to be capable of running no more than a few miles before collapsing. Seemingly impressed if not awed by my plan to be a marathoner. BEFORE the marathon, the feat itself was THE THING. After….it’s about how long it took me and did I even finish? 

I can’t help but associate to psychotherapy and psychoanalysis when I think about the idea of approaching, starting to run, facing the ups and downs of the course, feeling and trying to acknowledge and push through the inevitable aches and pains that arise and then seeing the finish line….crossing the finish line. The last part of that idea…finishing….such an amorphous notion in the world of treatment. Over the years, I have myriad patients ask, as they start the process of therapy, “how long will it take?” After exploring the question, I often would say “it’s a process and I cannot say how this treatment will go.” Something like that. I can’t promise where the finish line is and how long it will take to get there. But I have faith we will try to get wherever “there” is together. My patients usually find my answer frustrating. We like to see finish lines. It brings a sense of order to a process that is filled with a lot of disordering and difficulties. You take on treatment and you take on a marathon of introspection and relational dilemmas/solutions, self-understanding, increased knowledge of your capacities and shortcomings.  So many similarities to an actual marathon.

One matter I associated to in this regard is the idea of competitiveness. Now, for me, this is a significant part of my approach to many matters, especially matters of sport. Yet, I do remember more than once wondering whom would finish treatment first, the woman who I always saw exiting her session before I entered mine, or me? Who would get better more quickly? Figure “it” out faster? Self-realize sooner? Yes, I know it’s not a competition and treatment, just like running a marathon…is a process…a “marathon,” not a 10K race. A marathon is about YOUR journey; a 10K race can be about that too, but for me, it ‘s about kicking the
ass of anyone who’s getting in my way.

When I got to mile 22 in last week’s marathon, my quads were screaming bloody murder and I was having a very hard time ignoring their bellows of agony. I knew that this was the time to know the pain was there, but to draw upon my mental reserves to get me to the finish line. I’d come that far, I needed to just keep running. But….I stopped to walk….a few feet. And then I resumed running. It reminds me of those ebbs and flows that I see in treatment with patients where they seem to be plowing ahead with a great insight and they feel really good, since it took a lot of work to get there…and then they get stuck again. And things feel shitty and immobilizing and the pace slows and they might even feel hopeless and despairing. But hopefully they keep on at it and find their inner resources to keep them in the process. I think that’s what my little walks were about. Yes, WALKS. I took about three. All about the same distance…a few feet. I was trying to get my bearings. In those moments, I could not see the finish line. Ironically, I was closer to it than ever before and I could really picture it, but it seemed so far away. And I couldn’t go as fast as I wanted to go…as I usually can go when the race is shorter. And I had to tolerate that experience and readjust my process and expectations. This is what happens in treatment all the time. And, likewise in life. 

Well, I crossed that finish line with such overwhelm and pride and frustration…because I did it! Yes! But, I knew I didn’t make my goal time. My goal time that was based on something arbitrary…a competitive urge in me towards someone I have no right competing with, especially in regards to marathon running. But it had given me a goal, something to shoot for and aspire to as I involved myself in this arduous, rewarding, exciting, challenging, painful, self-realizing process of deciding to do….what was it a marathon or treatment I was talking about? Hmmm….