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:

Advance Directives and Treatment Planning, Part 2 of 2: It’s YOUR Body and These Are YOUR Choices

[ estimated reading time: 3 mins 29 sec ]
What made me even more motivated to do all of this is a situation I’m in with my pain management doctor. Words can’t express how thankful I am for his help, but the office is crowded, and sometimes they are more interested in swiftness than quality time. You’d think adequate communication was fairly important when discussing things such as burning away your nerves as a type of “treatment”?

The conversation has always been, We’ll try to numb the nerve, then if it works, we’ll burn it. Never once was I asked how I’d feel about this, or if I wanted to do it. So much so, that I nearly forgot to contemplate it, myself!

Because of the side effects I got just from the “trial” shot, doing something semi-permanent like radiofrequency ablation–or radio frequency nerve lesioning as it’s also called–would probably result in the same bizarre side effects, only forever: Never being able to recognize myself in the mirror, and never being able to keep my balance even with my eyes OPEN.

Does that sound AT ALL how I want to spend what could be my last stretch of life able to truly function? NO. I still don’t know why those odd side-effects accompanied my injection, but that’s what happened.

They were very willing to work with me when I discussed how I absolutely cannot have the steroids that usually accompany the nerve block/make it last longer, but I’ve still had a lot of anxiety about discussing how I don’t want to obliterate one of my nerves in an attempt at “relief.” That’s the exact opposite of what I view as self-care and treating my body kindly. But I don’t want to seem like I’m not wanting to help myself, something everyone with chronic illness has been accused of at least once but more likely a dozen times.

I also don’t want to come across as just wanting pills and nothing else, and get some unwanted reputation as a pill-seeker. As much as pain management advocacy groups make it sound like everyone has the right to pain control, I’m sorry, but being mislabeled still happens. A lot. Part of the reason it took me so long to seek pain management in the first place is because in the past I was always denied at the ER: They didn’t believe me and unjustly assumed I was only there for drugs because my conditions (Fibromyalgia, at the time) were so poorly understood. I know my anxiety has stemmed from all this, because what if my current doctors also don’t understand? But I’m at the point now where I’m too frustrated with the fact that my opinion over what I want to do with my body was never even requested, so they will either understand, or I’ll have to find a new clinic.  We have to talk about how I do not want to do that to my body.


My point in this two-part entry, is this:

You don’t have to do what’s “expected” of you, when it comes to your health. Whether that concerns end of life care, medical treatments, or prescription options: If you want them, and you think they’re worth the risk–and they all have risks–then try to get them. But don’t feel pressured to get them just because someone else thinks it’s right, because your doctor thinks it’s right, or because other people wish they could have it, if it’s not really what YOU want for YOUR body and YOUR life.

For a long time I even felt guilt over turning down my Lyme etc. treatment because there are people who want to get treatment, that can’t… But that doesn’t do anyone any good at all. It doesn’t make sense to kill myself with antibiotics just because someone else wishes they had any antibiotics at all.

And don’t forget to consider what it means for you in the long run. Many people want to stay around for as long as possible, no matter what the cost; for their children, spouse, best friend, others who need them, without stopping to think of how those emotionally-charged decisions are actually going to affect their life. It’s worth the extra thought.

Are they still getting “you” if your attempts to stay alive rob you of your body and mind? Is it in the best interest of your values and morals? And are your morals and values in your best interest?

Cellphone photo #10
“I will live. we all one day will. but where’s the difference between life and living?” (Photo and text credit: Leni Tuchsen)

At what point is prolonging your being alive with the aid of modern medicine only going to promote your suffering?

a rainbow at night

Guest Writer: “It is healthy to talk about what you are going through.”

[ estimated reading time: 2 minutes 24 seconds ]

I’m here to make another installment to my Life Lessons section, but this time, with the words of a guest blogger:

I’m really tired of “not talking about your illness” equaling “being a stronger person.”  No.  It is healthy to talk about what you are going through. 

Illness is not something to be shoved away and ignored like it is dirty and shameful.  No.  Illness, disability, old age, and dying are a part of life.  It is natural.  It has been with us forever.

Every single human being that has ever lived has dealt with it in some fashion.  Every single human being has died, or will die.  If they live long enough, those still among us will will watch a loved one die.  They will get older.  They will encounter disability in themselves or others.  They or somebody they love will get sick.

For me, it would be unhealthy not to talk about something so inevitable and universal.

I talk about my illness.  I am sure it makes some people uncomfortable and has driven some people away.  But it affects nearly all of my life right now, and I see no reason to pretend like it does not.

— the author of Black Cat Saturdays

No one should be made to feel like they have to deny a part of themselves or a crucial part of their life in order to win the affection and/or acceptance of another. As with anything in life, it’s all about balance. We have to find a middle ground between talking about what we are going through, honestly, and yet not being consumed by it.

I know people on both extremes–those who never talk about it, and those who talk about absolutely nothing else. It is detrimental either way.

The person who never talks about it–perhaps to keep people around, not make others uncomfortable, or stay in denial about their own circumstances–ends up feeling cheated, abandoned, and can lose self-respect.

The person who talks about nothing else, forgets who they are entirely, and sees themselves only as “the person with such-and-such disease.”

But we are more than sick, or disabled, or terminally ill. We still exist, and we still have purpose and love to share. But in order to get to that place, we have to realize–and hopefully be accompanied by people who realize this, too–that we are also people who have to grieve in a healthy manner, who have to express ourselves as we go through this part of life, and it’s not our job to make sure everyone else stays comfortable while we do it.

As written above, we will all go through these things at some point. It’s just that we who are already going through it, simply don’t have the time or extra energy to spend worrying about someone else’s opinion of how much we’re “allowed” to share before they feel inconvenienced…

a rainbow at night & black cat saturdays


I feel the need to share again “The Silence of the Dying” by the late Sara Douglas.

How I Forgave the Doctors That Called Me “Crazy”

jagged leaf shaped like a heart rests upon wooden boards on the ground
© a rainbow at night

This year I feel I’ve really evolved as a human being. A lot of my focus has been to get rid of the anger I’ve felt. One major thing I finally let go this year, actually, was the resentment aimed at those who got to enjoy things I may never get to do, ever. Sure, I couldn’t be angry at friends or family, that was easy enough, but put me in the room with a stranger who’s telling me about how they’re going to a party that night with all their friends, and… You get the idea.

I owe that in huge part to reading Toni Bernhard’s How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, for actually giving me the tools to know how to do that: How to acknowledge those emotions without feeling I was a bad person for even having them, and focus on how much more wonderful it was that they did get to do those things, than it was that I could not.

But I honestly don’t have any explanation for how I came upon the realization I’m about to share in this post, besides that my brain has apparently developed some kinder, more mature, more well-rounded ways of viewing things I’ve thought a thousand times before.


Probably close to 95% of people who have either Late Stage Lyme Disease or Myalgic Encephalomyelitis–or, if you’re like me, both–did not arrive at that diagnosis very easily. (As those are the main two diseases I have, they’re my focus, but feel free to apply this to similar illnesses.) No, it probably went something more like:

  1. Go to the doctor expecting a quick fix for unusually-persistent symptoms
  2. End up getting passed around to every specialist known to medicine because primary care physician has no idea what’s wrong with you
  3. Get called crazy by every single one of them when the tests either come back negative or don’t show anything significant enough to explain why you feel like you’re dying
  4. Possibly get prescribed the most strongly contraindicated “treatment” for your disease because no one knows what you actually have, yet, which makes you immeasurably worse
  5. Get called crazy a few more times, and thus end up being evaluated by numerous psychiatrists who don’t find anything wrong with your mental state, or who
  6. Blame everything on a mental disorder that doesn’t actually cause anything you’re experiencing
  7. Finally get the correct diagnosis years later, through what seem like the most random series of events that ever played out in your life

Am I right?

All in all, the stage of acceptance known as “anger” doesn’t really ~just go away~ like some of the others.

The resentment and anger at all the doctors who could have helped you sooner had any one of them just not been so determined to say it was “all in your head”; the anger at those who said there was nothing wrong with you, when you actually had a progressive disease; the resentment at those who thought you were faking just because the tests were negative; the anger you experience all over again at remembering any and all of the horrible doctor visits where you were pleading for them to do something, anything, only to be told you just needed to get out more, and probably see another psychiatrist.

Trust me, I’ve been there. So when this sort-of-epiphany hit me, it was like a ten-year burden had been lifted off of me:

Did I truly, honestly think, that any one of those doctors who called me crazy, had any idea that I was actually suffering from a progressive neurological disease? Did I really believe that those people, those fellow human beings, somewhere inside knew that I was dying, and just decided to recommend exercise and antidepressants for the sheer fun of it?

If they had known that what a terrible disease the original “chronic fatigue syndrome” was–that it was actually myalgic encephalomyelitis, that it was made worse by exercise, that it was progressive in 25% of cases and fatal in roughly 1 of 20–would they have just told me to “get out more,” or “exercise more,” or “get back to work, you’ll be fine”?

If they had known that chronic Lyme disease (or bartonella or mycoplasma) exists where I live–that it would lead to multiple sclerosis, that the tests are often negative even if you do have it, that I still needed long-term antibiotics based strictly on the clinical presentation–would they have told me there was no way I could have it, that it was harmless even if I did have it, or that it was “only fatal in people with AIDS” and that there was “no reason to treat”?

Absolutely not. What kind of monsters did I think these people were?

No one in their right mind, especially a doctor who has sworn to Do No Harm, would know the truth of a disease so destructive and still call their patient crazy.

If someone was suspected of having MS, or HIV, or cancer, or a neurodegenerative disease, these physicians would have done everything they could to identify and fix the problem. If they had known what I was up against and the right approach to treatment, they would have done it.

But they didn’t know. And that wasn’t entirely their fault. Sure, there are always some doctors who go in it for the money and don’t care that much one way or the other, but they are few and far between. And sure, a doctor who keeps up to date on the latest research and alternative therapies is going to be more open-minded when it comes to a rare case. But when it comes down to it, there is a whole cluster of reasons why most of the specialists we saw were completely incapable of giving us an accurate diagnosis, the biggest of which is lack of information.

The reason we patients advocate so much is because in our hearts, we know that if someone else has the information we didn’t, they might not have to wait so long and suffer so much before getting accurately diagnosed and treated.

We also can’t forget that it’s not 100% the doctor’s responsibility to figure out what’s wrong with us based on absolutely nothing: We have to be honest and not afraid to be our own advocates. My LLMD says: The passive patient never gets better.

Now, there are some exceptions. There are doctors who know the facts and, because of legal reasons and public position, choose to turn and look away whenever one of “us” come their way. But that is also very, very rare. Most all of the dozens upon dozens of specialists had no idea what was wrong with me, what was wrong with you, and could only give us the best advice they knew, based upon what they thought was happening. In hindsight I really do understand how someone could think I needed psychological intervention, if they had no clue that my disease really did do all the things I was reporting.

You don’t throw a paralyzed child into a swimming pool–as happened to one internationally-recognized M.E. patient–to try to “snap them out of faking ill,” if you honestly believe they are sick. You do it if you honestly believe they are faking ill, because you have no knowledge of what M.E. actually does. If there is anyone to be upset with, it’s those in charge of spreading facts about these crippling diseases, and who don’t do it; not the doctors who have been armed with information they believe to be true, who just so happen to be completely misinformed about what we have.

So I finally just stopped being angry at them for not doing what they weren’t even capable of in the first place.

You may have heard before that, Forgiveness is letting go of the hope that the past could have been any different, a quote popularized by Oprah although she’s not who originally spoke it. And in my realization, I also let go of the thoughts that any of the doctors who had mistreated me out of their ignorance, could have ever treated me any differently based upon what they knew. If they knew better, they would have done better.

I am now going to instead focus on how blessed I am to finally have my diagnoses, and be glad that I am one of the lucky ones who still had time left to begin treatment. I hope this can help some of my readers move past their anger, also, perhaps just a little more quickly than they would have, otherwise.

Be blessed in the New Year, and always!

a rainbow at night

Battle of the Pills: What Managing Chronic Lyme Disease Really Looks Like

I always said I’d do this one day. Post a picture of all the medicine I have, about a third of which I must take every day; a third of which are as-needed/to save me from worse things; and a third of which I take several times per week depending on symptoms. But I never did, and getting to the bottom of why is almost more of a journey than I’m prepared to write about. I still feel ashamed.

I feel ashamed that I need so many medications while the majority of people in my age bracket might take one or two, or maybe none at all.

I feel scared at the reality that if you were to take them all away from me, I would crumble, my body becoming a non-functioning mess, encompassed by disease before it slowly withered away; it’s painful to be reminded of how much I need them.

I feel resentment at myself, because a little part of me thinks that posting this only sends the message, Hey, look at all this medicine I take, I must be really bad off if I need all this medicine, doesn’t this make me seem attention-seeking, and that it will attract a more vicious crowd. Because that’s not what this is about and “sick” is not all that I am by a long-shot…

But it’s impossible to separate yourself from what is–a human being living with chronic disease–when every three hours you have to remember to pop one of these pills, “or else.”

I feel anger, and guilt, and any other number of emotions, after constantly being told, “You can’t possibly need that many pills. I don’t like taking pills because they have side effects and they might cause something else to happen; I just don’t know how you take all of that!”

Well, it must be nice to have that choice of whether or not you get to take something, because not everyone has that. I certainly don’t. Not if I want to function or be able to do anything at all, like breathe or eat or walk, on a good day; not if I want to give myself the best chance at having a “normal” life, one that will never, ever be normal anyway.

These are all of my current prescriptions. There are twenty-five of them here, that are still useful and/or necessary. These are excluding the ones I’ve taken in the past but no longer need, such as Nasonex, Ambien, Doxycycline, Sporanox, Nizoral, et cetera…

…and these are my prescriptions plus all necessary supplements and herbs that I have to buy myself. This doesn’t include the three from other rooms I wasn’t able to get, so the total comes to forty.

This, after years of dwindling them down to the ones that genuinely do something.

 

The main reason I remember wanting to do this, was specifically because I had a problem with it, and I don’t like anything holding power over me. I didn’t want to show anyone this post. Sure, when my family and friends visit, they see the eight or so bottles I have stacked on top of my bedside table. And they see me grab a bottle or two in the middle of our conversations, either because it’s time for another dose of something, or symptoms have arisen. But it’s easy to allow those very close to you to see what you go through. It’s something else entirely to disclose it to the world and expose yourself to scrutiny. But…

This is the pharmaceutical side of having myalgic encephalomyelitis, a disabling neuroimmune disease that has no cure, only symptom-based management.

This is what it’s really like having chronic, late stage Lyme disease, and bartonellosis, two potentially-fatal bacterial infections of the nervous system that may persist after months, or, in many cases, years of attempted treatment.

And this is the shame resulting from years of subtle and not-so-subtle messages from society, friends, even family members, that say, “Be quiet about your disease, lest you make the rest of us uncomfortable.”

People need to know all that these diseases can do, not just the side that makes the newspapers because someone “miraculously recovered.” Pardon me if I don’t want to be quiet about it anymore.

a rainbow at night