Trusting Myself to Build Healthy Relationships After Surviving Narcissistic Abuse


Okay, first thing’s first. I do have multiple sclerosis.
More specifically, the diagnosis right now Clinically Isolated Syndrome, one of the MS disease courses, which can present with or without optic neuritis; mine presented with, hence those particular symptoms. There’s less than a 15% chance I won’t have another attack, truth be told this ISN’T actually my first attack, and there’s a 95% chance this IS caused by my untreated neuroborreliosis (Lyme disease). I am now mostly recovered from that attack and my ophthalmologist confirmed last week there has been NO permanent damage to my optic nerves! I’m going to make a detailed post about all this on its own, but I wanted to get that out of the way before I continue because it’s relevant towards the end, and some of you may not follow me on Twitter where I revealed this information back in April. Now, on to my point of interest for today…

Into the Fire

Sometimes, mental illness makes me overly reactive. Other times, as I’m “coming back,” I retain that “edge” needed to take constructive action towards the situations that actually needed it, all the tiny things that simmered low on my priority list because I had more important fires to tend. But even though fire burns, I remain grateful for its role in purification.

“Pre-menstrually we tap into our firepower — our ability to rage and destroy. … The greatest gift of our moon time is in learning to clear space and enter the darkness, in order to be reborn as fertile, creative beings once more. We learn that this letting go, this cocooning in the darkness, is integral to our health. Again and again we must learn to be comfortable in the formlessness of transformation, and rest in the mystery.”

— from Burning Woman, by Lucy H. Pearce

In the past, this edge had sometimes been the only thing connecting me to my power, the only thing to show me that the things I was upset about actually had merit and deserved greater attention. Lucy also paraphrases this very astutely in her other book, “Moon Time”:

“I use the sword of my intolerance to cut deep and true. I keep hold of my vision and manifest it.”

I can think of no better metaphor than this. Allowing the innate wisdom of our frustrations to guide us to their roots, the one place from which we can actually enact change, because we’re finally courageous enough to look at why these seeds have sprouted in the first place. So maybe…

Maybe I should pay more attention when people breeze past painful details I’ve chosen to privately share with them, because that’s a clear sign they lack empathy.

Maybe I shouldn’t keep any digital platform that worsens my mental health, especially just to stay in touch with people who have lots of other ways to stay in contact with me, if they wanted.

Maybe it’s okay if I don’t want to be the only one who tries to keep in touch, 100% of the time.

Maybe I shouldn’t give privileged access to my life to those who only want to be spectators, or to those who only want to get involved in the fun parts. Maybe it’s okay to not be okay with that.

Maybe I should remind everyone that you are not entitled to anyone’s personal information just because you ask kindly, because kindness should not be a manipulation tactic.

Maybe I should remind everyone that my “no” demands as much respect as my “yes,” and that I will not be coerced into feeling a sense of obligation to perfect strangers.

Maybe it’s okay to trust my intuition when things don’t add up and I feel someone isn’t being honest with me.

And maybe I’ll try appreciating myself more for carefully selecting the people with whom I’d like to build long-lasting friendships from here on out, instead of chastising myself for being cautious.

Because I want and need to get back to offering myself to this world, and maybe it’s finally safe for me to believe I CAN manage my new mental and physical limits, and get back to living within them on my own terms, instead of constantly apologizing for not being able to meet everyone else’s.

Responsibility

For the longest time I’ve been trying to find the right way to interact with others, as a survivor of all types of abuse. For example I used to think it was normal to build a relationship with someone emotionally unavailable, because in my formative years it was very dangerous to have my own needs, emotional or otherwise. What better way to emulate not having your needs acknowledged than to pursue someone who would never acknowledge them?

I think that’s another reason me being unable to be there for anyone during my recent downward spiral, affected me so drastically. It’s no secret I live with obsessive compulsive disorder, which constantly tells you that you’re an awful creature who’s going to end up hurting everyone and then tries to convince you secretly like hurting people. (Oh, did you think OCD was just hand washing?) So while all my mental illnesses were jacked up on steroids, OCD really latched onto the idea that by taking time for myself to heal, I was the abuser, now. It makes no rational sense, but such is disorder. Anyway.

Narcissistic types are drawn to people like this, and those struggling with codependency: people-pleasers with an addiction to approval and/or relationships, who feel their only value lies in being who or what someone else wants. I’ve been a recovered codependent for years now after at least ten years of treatment, but I still attract narcissists because they are also drawn to compassionate, empathetic people who enjoy listening to and validating others; you know, people who will give them their “supply” of attention.

Sometimes it’s still hard to trust myself about this, initially. When I start to like a person I immediately think, “What if I only like them because subconsciously they’re exhibiting behaviors that mimic those of the pathological human beings I grew up with, and this is just another quick dead end?” That does happen to me quite a bit, but that’s the chance any of us take in attempting a new relationship. Now, I can spot the red flags relatively quickly and be on my merry way, instead of wasting years in unfulfilling one-sided relationships that I unfortunately tolerated.

When things aren’t working out in your relationships, you have to ask yourself: Which patterns do I keep repeating, and what is my role in it? What are you putting up with that you probably shouldn’t? What do you need yet aren’t actually requiring of anyone? To put it bluntly, what aren’t you requiring of yourself?

It’s uncomfortable being around those who don’t have empathy, but if I see the red flags and still keep them in my life, I’m just as much responsibile as they are, for the pain that comes from being around them. You know the Maya Angelou quote by now: “When people show you who they are, believe them, the first time.”

It’s painful when others don’t want to keep in touch with you unless you’re the one bridging the gap, but if you’re always the one meeting everyone else on their terms, you will eventually discover some friendships existed ONLY because you were meeting them on their terms.

And it’s jarring when people pop back into your life out of no where feigning interest in your well-being, only to disappear into the background again if you happen to be in a rough patch. But I’m the one who has to look that dead in the face and decide either “Yes, I’m okay with this person only being in my life in this superficial way,” or “No, I’m absolutely NOT okay with opening my life up to people who only show interest in being spectators, not friends.”

In other words, my dears, there comes a point in your healing from abuse where you understand you are no longer a passive victim but an active participant in the way your life and relationships are unfolding. When you know better you do better, etc. Victims don’t have any responsibility for their situation; that’s why they are a victim. This means they don’t have any power, either. That’s also why they are a victim. We may have been made victims in the past by predators of all varieties, but now, we are transitioning to survivors, which means we not only get to take responsibility for our healing, but we also have the privilege of taking responsibility for whatever new relationships we build along the way. We’ll make lots of mistakes, but don’t worry: Mistakes are just a natural part of burning through toxic bridges and outdated ways of existing, so that the fresh new ground underneath–fertile, healthy foundation–can finally be revealed.

Strength

I am a creature of many strengths, but I must regularly take inventory that I haven’t surrounded myself with people incapable of showing love. I have to remember that with my gifts of knowing how to make people feel heard, accepted, and appreciated, comes the extra need to protect those gifts from those who just want to take advantage.

I finally trust myself now to not be afraid of my own boundaries or the reactions of others once I set them. I finally see that it’s not my fault I attract predators, that boundaries are okay, and FOR ONCE–even if it’s only this very moment that I type this–I DO NOT FEEL GUILTY. It’s one thing to think these things and live by them just on their virtue, but now I actually FEEL this truth; the gentle power and mutual respect that lies within every human’s right to set healthy emotional boundaries.

The fact that anyone gets confronted with another’s healthy boundary and then runs away, is just a tell-tale sign they don’t like being told “no.” And I’ve realized that if someone is too weak to hear my “no,” they will never be able to handle my “yes.” They will never be able to handle me, at all. I am a force to be reckoned with, and I need to start surrounding myself with other strong, loving people who can handle everything I am. Sure I have difficult patches, but everyone does, and OCD be damned, that doesn’t make me a monster. I need more people in my life who know their worth, who recognize their resilience, who can hold their own, and who see boundaries as a sign of another healthy individual.

You see, narcissists can’t handle being around strong people. That’s why the moment you show them you have a backbone–that you can say “no,” that you aren’t afraid to speak up for your needs–they find another target or lash out, because they know if you’re not looking for others’ approval they don’t have a leg to stand on when it comes to trying to manipulate you. You can’t be controlled by fear, obligation, guilt, or them playing the victim by being offended. There’s certainly a large gradient between “immature” to “narcissist” and then further down the line to “psychopath,” but I am DONE surrounding myself with these types. Any of them. All of them. I’ve had enough to last me twelve incarnations. For all I know it’s already BEEN twelve incarnations of me trying to do exactly what I’m doing right now: Learning day by day, month by month, year by year how to keep energetic vampires out of my life.

Recovery

Over the last couple of months, I’ve successfully been able to manage my problem of becoming too easily overstimulated, and I’ve been learning to identify the tiny things that precipitate a shutdown. For example I’m able now to share with people that I need to retreat, before I need to retreat, before I feel forced to disappear without any warning at all.

I’m also significantly better cognitively, after a short course of antibiotics for some random infection back in March. Maybe Lyme or Mycoplasma is playing a role, or it’s the PANS/PANDAS–an autoimmune disease that first presents in childhood which causes my body to attack my own brain when I’m battling any infection–or it could be related to the MS and its own inflammatory process in my nervous system. Or some combination of all of it, who knows. But! What I do know, is that I knew I knew I KNEW this wasn’t just something I was doing to avoid life!!

After finally coming out of my extended mental and physical relapse, after seeing the results of my lumbar puncture, after getting the diagnoses from my neurologist and ophthalmologists, and feeling my profound improvement after antibiotics, I feel… It’s as if I can trust myself again, because it gave me solid proof that my brain really was significantly altered, and it had very little to do with me “choosing” to isolate. I isolated because my brain was trying to process trauma while being inflamed by lots of extra immune cells while trying to prevent neurodegeneration and blindness while fighting pathogens literally designed to spiral into my brain tissue AND I have an autoimmune disease that makes these processes not only cause new mental illness but exacerbate all the preexisting ones. It makes perfect sense why I was unable to function normally or converse at any length.

I spent months rationalizing everything to the end point that I must just be inherently careless and awful. And I had started to believe it. Now I know better.

And if it happens again, instead of being terrified that I’ll lose everyone I love, I will know what steps to take to attempt treating the symptoms, AND feel more confident that I can share with whomever happens to be present that this is literally a symptom of disease, not just maladaptive behavior of my personal choosing. Between that and having unlearned the unproductive coping mechanisms I tried along the way, I have so much more faith that I will be able to deal with whatever happens…WITHOUT believing the guilt.

As I think my writing showed, I was making a lot of progress, and finding significant healing, until the flood happened… I feel back on track now.

Burning Women

Thank you Lucy, for teaching me and millions of other women that the energy in I’ve Had Enough doesn’t automatically have to be feared, especially for those of us who’d never seen it used correctly:

“In the heroine’s journey we realise that the dragon lies not in a far-off land, but curled within. And so we are called inwards. Into the dark cave of our unconscious. …

“This power is mine. I have come to claim it.” Repeating it until you, and the dragon, know it for truth. …

And suddenly the danger is gone. No fight necessary. That dragon had sat on your power for so long it had come to believe it was its own. You had spent so many years listening to the myths of the dragon, hearing him growl within, you got so scared of these stories, that you never thought to come and meet him for yourself. The dragon never was your enemy. The treasure never was his. It’s yours. It always was. All he was doing was waiting for you to claim it, protecting it from those who would steal or misuse it. He knew his job was to protect it until you were able to care for it as fiercely as he. Until you knew yourself as its rightful owner. Until this great wealth would be used wisely, not to do damage to yourself or others. Until you were learned enough in the ways of the world not to squander it or give it away. That was his sacred role, as your greatest ally and protector. …

[W]e are brought up to hand over our power, to let others take care of it, and ourselves, in exchange for us taking care of them, emotionally, physically and spiritually. It is a heavy burden, one usually done unconsciously, and yet expected culturally. A woman who is not willing to engage in this exchange is usually shamed as selfish and immature. But it is an exchange. So as Burning Women we make a new deal: I take back my power, and I learn to take responsibility for myself…and you in return take responsibility for yourself. We may share ourselves and our lives, experience deep love, care, intimacy and connection, but we are each the keeper of our own power. This is the move from co-dependency — the model engendered by our culture — into independence. Intimacy, penetration and sharing through choice, and consent, not obligation.”

Burning Woman

Thank you Marianne Williamson for also shining the Light on this topic with one of my favourite quotes from you:

“Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you.”

A Return to Love: Reflections on the Principles of “A Course in Miracles”

And thank you Roshi Joan Halifax, for eloquently explaining the value of anger–again, especially for those of us who’d never seen that used correctly, either–when you spoke these words:

“I think one has to understand anger in perspective. Anger, for one thing, has within it the seed of wisdom associated with clarity, with discernment. If you cut the value of anger out of your experience, in a way you’re taking some of the structure that allows us to see clearly into things as they are. So the seed of wisdom in anger is discernment. That’s the first thing. The second thing is, our anger toward the experience of disempowerment that is going on… We should be angry. And that sense of moral outrage, in other words the violation of equity. . .gives us the arousal level necessary to mobilize ourselves into action.

“And it’s essential that we act. We can’t just sit there, gaze at our navel, and say it’s all love.

“Love does not mean that we are passive in the face of harm. I think Martin Luther King was clear about the relationship between love and justice. Anything that stands in the way of love is unjust. The absence of justice points to the absence of love. So I don’t separate love and justice in this regard. I see them as intimately intertwined.”

— Be Here Now Network: Mindrolling Ep. 183 – “The Integration of Justice and Love”

Until next time,

Kit


Relevant Links:

Mycoplasma and Reflections on Having PANS/PANDAS

The most important thing to report this time is that my random cough continued to be persistent and began to worsen, so I saw my primary physician who says I now have asthma. (Well, asthmatic bronchitis–two in one, aren’t I lucky!) If I were to assume this to be infection and/or herxing related, I would say this:

Since I’m fighting Mycoplasma pneumoniae, a bacterium that usually causes pneumonia (but also loves to attack your nervous system), my best guess is that treating this beast has caused a lot of herxing/die-off/inflammation in my lungs, where it’s most likely been hiding out, at least partially. And said die-off may be causing the inflammation that’s triggering this asthmatic response… I mean, it can’t be any coincidence that as soon as I start trying to kill the pathogen that has caused lung problems for me in the past, I get inflammation in my lungs. Right?

But if that’s not it, then I have genetics to thank. I’m going to go with “will hopefully go away as I treat Mycoplasma” theory until it proves itself otherwise. At least I’m not having any trouble breathing. I just have this cough, which, after three days on Dulera (which is literally just my Nasonex in an inhalable form…mixed with formoterol), I’m much, much better. :)


I’m convinced I had PANDAS (PANS) as a child; it just wasn’t a diagnose-able condition back then. If so, then I definitely still have it, because my body has clearly reacted the same way as an adult. This might sound like baseless self-diagnosis but this will make sense as I’ll discuss further below.

It stands for “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections,” and is basically what it sounds like: An autoimmune response to strep that causes damage to the brain, primarily resulting in neuropsychiatric illness like obsessive-compulsive disorder and tic-disorders like Tourette’s Syndrome. (PANS refers to “pediatric acute-onset neuropsychiatric syndrome,” the same as PANDAS but without being caused specifically by streptococci.) In the “My Story” section, I ponder over whether or not something triggered my childhood-onset disorders of OCD and Tourette’s Syndrome, whether that might have been a brush with tick-borne infection, or something similar. After realizing there is an actual condition that does exactly this, it all makes too much sense:

  • my primary immunodeficiency disease makes me extremely susceptible to infections (especially Strep)
  • a history of autoimmune responses to things (like vaccinations)
  • the fact that both my OCD and Tourette’s were acute-onset
  • those conditions flare up whenever I get additional infections, especially bacterial

As Lisa Wolk-Kilion writes for one national magazine:

“Although the word ‘pediatric’ is in both names, it is surmised that the disease is not merely a childhood one. . . The encephalitic-type illness is brought on by an infection, resulting in antibodies that barrage the basal ganglia. … Once the autoimmune system is damaged, any germs can trigger a PANS flare.”

So, an autoimmune disease that responds to infection by attacking your own brain, instead. I was practically a walking target to get myalgic encephalomyelitis in the future, wasn’t I? :\


On that note, I have to state the obvious, that Mycoplasma and Strep are very similar in this respect: They usually cause upper respiratory infection, but in the immunocompromised, they can wreak havoc everywhere, especially the nervous system. You know what happened to me when I got both Bartonella and Mycoplasma a month apart from each other in 2008? My Tourette’s syndrome and stuttering flared up so bad I could barely talk for three months. I also got extremely paranoid, showing clear neuropsychiatric involvement. Additionally, that’s when my movement disorder began worsening. I had the beginnings of the dystonia since getting Lyme disease (even though I didn’t know I’d gotten Lyme, yet), but after those two infections, things progressed very quickly. (The Tourette’s and stuttering eventually died back down, though they love to pop up at random, especially when I’m under emotional or physical stress.)

Treating Bartonella helped the dystonia symptoms A LOT…a lot a lot. But the thing is, the antibiotics that treat Bartonella are the same antibiotics that treat Mycoplasma (or at least the ones I was on, except for Bactrim), so I have no idea of knowing which infection is responsible for it. It’s not gone yet (as evidenced by my oromandibular dystonia showing itself more lately), but the worst parts of it stopped progressing after a year on Rifampin (with other antibiotics).

This is one of the reasons I can’t type up a post explaining my Bartonella experience and treatment: Because even though I can pinpoint a lot of which symptoms were caused by Bartonella–especially the ones that recurred every 5-7 days–I have absolutely no way of knowing exactly which infection caused what, specifically in regards to my dystonia and other related movement disorders. Because I got those infections a month apart from each other, and I treated them both at the same time. I can type about my theories, but I can’t put a bunch of information out there that people are going to read, without being sure. All I have are correlations, and patterns, which I happen to have a talent at spotting.

Two years ago I hypothesized that Mycoplasma (which I easily tested positive for on the first try, unlike the others which I had to coax out with speciality labs) was going to play a much larger role in my health issues than I had at first assumed… I had no idea how right that would be.

[ETA 2017: It’s been 5 years since this post and Mycoplasma pneumoniae has now been recognized to be a determining factor in the diagnosis of PANS, which all these additional years of disease and severe psychiatric relapse have unequivocally proven me to have.]

“The association of mycoplasma with diseases like arthritis and chronic fatigue syndrome, which has been implicated with a response of the body’s immune system against its own components, is consistent with the growth and behavior of mycoplasma. The absence of a conventional cell wall allows mycobacteria to penetrate into the white blood cells of the immune system. Because some mycoplasma will exist free of the blood cells and because the bacteria are capable of slow growth in the body, the immune system will detect and respond to a mycobacterial infection. But this response is generally futile. The bacteria hidden inside the white blood cells will not be killed. The immune components instead might begin to attack other antigens of the host that are similar in three-dimensional structure to the mycobacterial antigens. Because mycoplasma infections can become chronic, damage to the body over an extended time and the stress produced on the immune system may allow other microorganisms to establish infections.
“Strategies to eliminate mycoplasma infections are now centering on the strengthening of the immune system, and long-term antibiotic use (e.g., months or years). Even so, it is still unclear whether antibiotics are truly effective on mycoplasma bacteria. Mycoplasma can alter the chemical composition of the surface each time a bacterium divides. Thus, there may be no constant target for an antibiotic.”
Mycoplasma Infections via Encyclopedia.com
World of Microbiology and Immunology | 2003, The Gale Group Inc.

If anyone has any experience or information they want to share with me about PANS/PANDAS or similar things triggering OCD and Tourette’s Syndrome, feel free to comment or contact me.

a rainbow at night


Updated December 2015 to add helpful links about PANS/PANDAS
Updated May 2017 to add more helpful links and confirm diagnosis

Relevant Links:

Premenstrual Dysphoric Disorder: No, it’s not “just really bad PMS.”

For the past week I’ve had…..well, first off, NOT a Lyme disease flare up! :) But I have been experiencing another type of “flare up,” if you will: Premenstrual Dysphoric Disorder, or PMDD.

PMDD can probably best be described as an abnormal reaction to the normal hormonal changes that occur with each menstrual cycle, and it can feel more like a mild form of psychosis than a type of dysphoria. It destroys your perception of what is actually going on around you, and can be strong enough to make you want to die by suicide. It is also associated with “premenstrual exacerbation,” whereby any existing stressors or mental illness will be amplified, sometimes to the point of mental breakdown.

It begins two weeks before menstruation and continues worsening in severity until menstruation begins, when all symptoms abruptly go away due to the body’s hormones stabilizing. No one has come up with a way to cure it, yet, or even knows what causes it. One of my psychology professors in university thought it was just a made-up term for people who wanted more attention. There’s been talk of genetic predisposition, correlation with PTSD and trauma, and a history of other mood disorders. For some, diet and exercise improve things, but diet and exercise improve most things if you’re able to engage them: it’s not enough to make the difference between suicidal and not suicidal, and if you ask me, it’s ridiculous to suggest treating such a dangerous condition with an afternoon walk and eating more lettuce. That’s just an example of the usual, “We don’t understand it or even think it’s real, so just get outside more and you’ll be okay.” (ETA: I’m happy to report this condition has been taken much more seriously since this post made in mid-2011, to the degree of even having a dedicated page on Johns Hopkins Medicine.)

Common symptoms include (of which I’ve had most all): 

  • feelings of deep sadness or despair, possible suicide ideation
  • feelings of tension or anxiety
  • increased sensitivity to rejection or criticism
  • panic attacks
  • mood swings, crying
  • lasting irritability or anger, increased interpersonal conflicts; typically sufferers are unaware of the impact they have on those close to them
  • apathy or disinterest in daily activities and relationships
  • difficulty concentrating
  • fatigue
  • food cravings or binge eating
  • hypersomnia, sleeping more than usual; or (in a smaller group of sufferers), insomnia, being unable to sleep
  • feeling overwhelmed or feelings of being out of control
  • increase or decrease in sex drive
  • increased need for emotional closeness

My main treatment, as it is for a majority of sufferers, is Zoloft. (And, having M.E., a very, very small dose of Zoloft.) Medication is taken for the two weeks prior to one’s menses: It is safe to take at such short intervals without inducing withdrawals. In my case, I only do this every 2-3 months, and I haven’t had a PMDD episode in over two years. It seems to resets my brain chemistry and last for a bit so that things don’t fall off kilter whenever a trigger like hormone fluctuations come along. But after getting all the migraines, having to start Topamax, and being unable to have caffeine, that left only Treximet to treat the migraines that were still popping up, and you cannot take antidepressants with Treximet. So I haven’t been able to take any preventative Zoloft since.. January, while I waited to see how long it would take the Topamax to stabilize things. Because my migraines haven’t been so frequent, I started my Zoloft this morning. Within three or four days, I’ll be much better.

Yesterday I had a bartonella flare up on top of all the PMDD madness, so I was a complete emotional wreck. Other life events weren’t helping. Thankfully, today is here! But last night I decided to take one of those online psychiatric evalutation-type tests that I’ve played with over the years, out of curiosity. My results were very shocking!

Disorder Rating
Paranoid: Very High
Schizoid: High
Schizotypal: Very High
Antisocial: Low
Borderline: Moderate
Histrionic: Moderate
Narcissistic: High
Avoidant: Very High
Dependent: High
Obsessive-Compulsive: High

Personality Disorder Test
Personality Disorder Information

I know what my usual results are: Low on everything except OCD, which I actually have; and Antisocial, no doubt due to my introverted tendencies overlapping with the questions.

So, in case you needed a visual of what PMDD and bartonellosis can do to a person, there you go. They can take someone with good mental health and turn them into that.

a rainbow at night