Patient Abandonment & Forced Opioid Tapers
This is part of a letter sent to a hospital after patients were informed that their opioid scripts would be suddenly discontinued following a doctor’s retirement. The hospital agreed to contact the primary-care physicians of every affected patient to ensure continuity of care. Feel free to use this letter and/or this research if you’re in a similar fight. I’d be interested in your struggle–and your success–on this important fight for fairness for people in pain. I’m on Twitter (links below).
–Jill Piggott, PhD
First sentence depends on the situation:
I understand your hospital [or practice] allows doctors to refuse to treat patients who rely on opioids to manage disabling pain. This forces patients to discontinue an effective medication and puts them at risk of significant harm.
I understand your hospital [or practice] allows doctors to taper patients off opioids without their express consent.
If you’re the patient, write an opening that makes this clear. For instance:
For nearly a decade, Dilaudid has allowed me to manage disabling, daily migraine. Without it, I’m basically bedbound and can’t reliably get to the hospital or doctors’ offices for care. I’ve just learned that the neurologists you hired to cover Dr. —’s practice refuse to continue opioid prescriptions for his patients. I’m not well enough to travel long distances to find a specialist willing to weigh the benefit of opioid treatment for people with chronic, intractable pain like me. As a result, in less than 4 weeks, I’ll be forced off the only effective pain relief I’ve found.
I’m sure you’re aware that it’s not safe for patients to abruptly stop taking opioids and that you’d be violating the CDC opioid prescribing guidelines if you forced patients off opioids without their consent (see “CDC Advises Against Misapplication of the Guideline for Prescribing Opioids for Chronic Pain” linked below).
The CDC’s recent reaffirmation that it never intended for patients to be abandoned or forced off opioids came in response to a letter from Health Professionals for People in Pain which reads in part: “Patients with chronic pain, who are stable and, arguably, benefiting from long-term opioids, face draconian and often rapid involuntary dose reductions. … Consequently, patients have endured not only unnecessary suffering, but some have turned to suicide or illicit substance use. Others have experienced preventable hospitalizations or medical deterioration” (see link below).
Disease progression can occur in illnesses that cause chronic pain if the patient’s symptoms are untreated. Consequently, even relatively short-term gaps in treatment can lead to long-term and even permanent disability. The hospital needs to recognize the legal jeopardy it’s in if you abandon patients and refuse them appropriate, effective care. Medical providers can be held liable for patient abandonment if care is terminated without reasonable notice or reasonable excuse and if the provider fails to provide the patient with a reasonable opportunity to find qualified replacement care. Providers should give patients written notification of termination and continue to offer care for a reasonable period.
The Food and Drug Administration has identified harms caused by the sudden discontinuation of opioids or by rapid decreases in dose, including “withdrawal symptoms, uncontrolled pain, psychological distress, and suicide.” In new labelling, the FDA explicitly states that “Health care professionals should not abruptly discontinue opioids in a patient who is physically dependent” (see link below).
The FDA advises physicians to obtain patient consent before discontinuing or tapering the dose of opioid analgesics and instructs them to “consider a variety of factors, including the dose of the drug, the duration of treatment, the type of pain being treated, and the physical and psychological attributes of the patient.” Physicians should “create a patient-specific plan to gradually taper the dose of the opioid and ensure ongoing monitoring and support, as needed, to avoid serious withdrawal symptoms, worsening of the patient’s pain, or psychological distress.”
There are “no standard opioid tapering schedules that are suitable for all patients,” but the shortest acceptable taper is in increments of “no more than 10 percent to 25 percent every 2 to 4 weeks.” However, “if the patient is experiencing increased pain or serious withdrawal symptoms, it may be necessary to pause the taper for a period of time, raise the opioid analgesic to the previous dose, and then once stable, proceed with a more gradual taper.” Finally, the FDA expects physicians to “ensure that a multimodal approach to pain management, including mental health support (if needed), is in place prior to initiating an opioid analgesic taper.”
Perhaps most alarming is the FDA’s assessment that the withdrawal symptoms associated with an abrupt discontinuation or too-rapid taper “can lead patients to seek other sources of opioid pain medicines, which may be confused with drug-seeking for abuse. Patients may attempt to treat their pain or withdrawal symptoms with illicit opioids, such as heroin, and other substances.”
Your hospital fails to follow current FDA guidance on prescription opioids whenever patients are forced to taper without their consent, when they are denied the ability to control the timing of a taper, or when they are abandoned for discontinuing a taper. Who is responsible for continuity of care and for ensuring the hospital follows FDA policy on opioid prescribing? I’d like to be in touch with that person directly.
I appreciate your attention.
“CDC Advises Against Misapplication of the Guideline for Prescribing Opioids for Chronic Pain.” US Centers for Disease Control. 24 April 2019.
“Health Professionals Call on the CDC to Address Misapplication of its Guideline on Opioids for Chronic Pain through Public Clarification and Impact Evaluation.” Health Professionals for People in Pain. 6 March 2019.
“FDA identifies harm reported from sudden discontinuation of opioid pain medicines and requires label changes to guide prescribers on gradual, individualized tapering.” US Food and Drug Administration. 9 April 2019.
“Access to Primary Care Clinics for Patients With Chronic Pain Receiving Opioids.” PA Lagisetty, et al. JAMA Network Open. 12 June 2019.
CDC Advises Against Misapplication of the Guideline for Prescribing Opioids for Chronic
Pain | CDC Online Newsroom | CDC
CDC Advises Against Misapplication of the Guideline for Prescribing Opioids for Chronic Pain | CDC Online Newsroom | CDC
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Today is my sixth anniversary on WordPress. I can’t believe how far I’ve come since sitting down on a particularly benign day, and saying “Why not?” It was a harmless move and thought, and I can say I am BLESSED to have remained friends with several people who first started following me on my original blog. It remains up, but hasn’t been active in a few years because I’ve been here, working, writing, sharing, thinking, and making new friends and better memories.
This is one of my major priorities; writing and sharing things I feel are important to share with all of you. 2018 was an enormous challenge for me, but I am looking ahead and trying to manifest more positivity than ever before. I’m the same person, but I’m growing and I want to be able to share that growth.
I have multiple novels in progress. I am going to be finalizing the final draft for a romance novel soon. I am going to revisit the Dark Urban Fantasy series (eight books, laid out) and see if I can complete the first two in the series. It’s better to be over-prepared as a writer, as opposed to under-prepared, and forced into a 6-8 months completion deadline when you’ve only got 10-15% of book two laid out. Book one is the foundation and every time I read the manuscript, I feel like I’m sitting in a bookstore, immersed in someone else’s characters. When I reach the end and my name is there, it still shocks me. Maybe 2019 will bring me more literature surprises I never imagined possible.
Last Friday, Global Healthy Living Foundation and Fifty State Network called me to do Media Outreach. I returned the call and missed the call back, so I ended up e-mailing my contact there. Let me first say that this position is as a patient advocate. This is still a relatively new field, so not everyone who advocates has gone to law school or has a degree in nursing, etc. Is this something I’d be interested in pursuing from a “Go back to school” perspective? No. I feel like I have an incredibly solid hand on things as a pain patient, and a refreshing perspective. I have a powerful voice I’m not afraid to use, either.
My contact is incredibly impressed with me, but when I received his e-mail reply, I read it twice and was immediately annoyed. It felt like another organization only too happy to take advantage of my contacts, intelligence, knowledge, and business sense. Smart people do NOT like or respect being used, so I haven’t replied. If that’s how it feels, then I am accurate in my assessment. I’m sorry, but if you want to have me consult, assist, or do anything that involves using all of my talents, I expect to be paid for it. I can’t dumb myself down or allow people to take, take, take and leave me unable to grow. In turn, I have decided to reach out to some local advocacy groups, even if I temporarily intern for a while, because I know that all I have to do is impress the right person. I can’t tell you how many times I have impressed someone and gotten into something new, simply by being myself. I wish it were always as simple as that, but it isn’t. I firmly believe the right doors WILL open this time. The ones that don’t might very well be kicked down, but that’s one part of me which often makes an impression on others.
If you search hard enough, opportunities will present themselves. However, I don’t want to advocate full-time. I want to achieve the goals I set for myself. Most of them are centered around writing and the others are centered around breaking out of my comfort zone. Perhaps I’m already halfway there.
I can’t believe this year is near its end. I feel like we were just saying goodbye to 2017. Tempus fugit! Pretty soon, we won’t even be able to talk about cold weather (I’ve been kind of obsessed with the way it has been affecting me.). For me, each year is about hitting goals and making sure I grow as a person. This year I have rid myself of toxic people and energy that was of no service to that growth. Interestingly enough, supportive friends stepped up where flakes were left in the dust, and I’m incredibly grateful and appreciative for the friendships that have been built on true foundations. In friendship, no one wants to be used, either, and I was definitely being used. No more.
Thank you to everyone who reads my work, who clicks LIKE, who clicks FOLLOW, and who shares me with friends, family, etc. Thank you for the comments and e-mails. But most importantly, thank you for taking time out of your day to read my work. The Internet is a vast place, and I feel honored whenever someone new follows me or whenever someone sends me an e-mail and tells me how much something I wrote impacted their life. Those are treasured, precious moments that I keep in my heart each day.
When I sat down to write this, I was already feeling incredibly lost, depressed, overwhelmed, unhappy, and dark. These are normally things I would only discuss with my doctor. He got an earful yesterday, and instead of making me feel bad (Far too many doctors dismiss me and look at me like I’m crazy for being concerned for my own health. That’s a clear sign you need a new doctor!), he told me multiple times “You’re not crazy. You’re not losing your mind. You’re going through a lot of rough things, and we’re going to figure out how to fix that, together.” He was clearly a lion tamer in a past life.). But as the words began to flow tonight, a smile appeared on my face and the negative feelings lifted, even if only temporarily.
There is so much more to my story, to my journey, to my life. More than I probably know. But ultimately, the majority of my gratitude goes out to my readers. You’re all amazing, kind, supportive, and I hope we will continue to laugh together, cry together, and be real for many more years to come.
Thank you all SO much. I’m not much of a hugger, but consider yourselves all hugged tight tonight.
copyright 2018 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED. All written work may not be re-posted anywhere without express written consent from the author. This authors’ work and personal photos are protected under United States and International copyright laws. Additional protection is covered under the Digital Millennium Copyright Act.
I read the full article in Sunday’s Globe. This article pissed me off SO MUCH.
***Potential Trigger Warning***
Friday night, I stupidly read my new diagnosis for the first time. And then I sat here in tears. The old diagnosis, which I’ve had for a long time, is clearly nowhere near as serious as the new one. My doctor isn’t even sure how it ever even fit because he doesn’t see it, and I do think it’s a case of having fresh eyes and a fresh perspective, as well. He did NOT try to box me in, but he answered me because I asked. I needed to know what the hell this was.
The new diagnosis basically states that nearly 60% of sufferers, or more, as it ranges from country-to-country, die by suicide, regardless of age. I was stunned into terrified silence.
I have always said I didn’t want to be a statistic, but reading the documentation; I feel like one.
As I stated previously, there are no treatment options left. I can wait ten years and hope a medication is approved by the FDA, but mostly, I am on my own. I cannot fathom ten more minutes like this, leave alone ten years, or longer. Hope is kind of futile at this point for me.
There’s a person in my life (heretofore to be referred to as “The Idiot”) who cannot think about anything but the future. I suggested they take things one day at a time during a stressful period, so as to help them help themselves focus, and they told me their “brain doesn’t work that way. That they must constantly look ten, twenty, and thirty years ahead”. I was astounded by the insanity of that. Especially knowing that there is a strong possibility they might not live that long. I take everything one hour at a time. It helps keep me focused. It keeps me in the moment, because I don’t have a crystal ball and quite frankly, I am not looking that far ahead. Nor do I care to do so. For me, life just doesn’t have that level of longevity any more. Truth be told, it never did. I always knew that.
There’s something very difficult, and exceptionally disheartening, about reading something on paper and realizing that every hope and dream you’ve ever had has been impossible to achieve because it’s likely never been meant to be. All the things you’ve wanted for yourself aren’t going to happen because something serious is interfering with all of it. It’s NOT you, it’s an incurable illness you never asked for and it’s destroyed your life immeasurably.
Thus far, I’ve only managed to tell two friends. One told me I needed to fight so I could stick around and “help keep her sane”. She means well, but that wasn’t the answer I needed to hear. I intentionally withheld the info from someone who I am afraid will be triggered by this. She has been through enough and I cannot be responsible for my health affecting hers. Other people might be triggered by this information, so while I am not disclosing what the actual diagnosis is, I am telling each of them in my own way.
I will not be discussing this diagnosis with close family members. I know that none of them care. I have slowly started to see their selfish, self-absorbed, self-righteous natures and I find it utterly despicable. I am grateful that I do not resemble a single member of my family and that we possess almost none of the same character traits. They live on their own planets, and I live in reality.
It hurts me deeply that out of everyone in my family, I would be the one afflicted like this while everyone else is allowed to live a normal life, or as close to a normal life as possible. It feels like the cruelest curse in the world. That’s not jealousy talking; that’s honesty. One illness is enough of a burden, but for me to have spent the majority of my life suffering is pure evil. To have to battle all of this alone makes it so much worse.
I have chosen to take a pass on all things temporary. I don’t need that in my life. If someone cannot be permanent or semi-permanent, then I don’t need them right now. I need solid support all across the board. I don’t have time for games or bullshit. I will be informing my doctor of that before he leaves. He can pass that message on because I know after we talk, he’s going to be very concerned. I don’t care how I sound or come off this time because I’m not here to worry about his feelings. He can contact my primary if he’s concerned, or whomever, but that isn’t going to make a difference at this point. I refuse to see the doctor he wants me to see. I’ve had terrible experiences with certain types of physicians and while this doctor might be wonderful, I don’t have any trust to offer this person. I will look for someone else when I’m ready. There’s a six month wait for anyone permanent, so I am going to inform the “temp” when she calls me that until she finds someone permanent, I am not interested. I cannot sit with a temporary person and build anything with them. That’s not how I operate. It’s an absolute waste of time. I’d rather talk to Cat and Kitten, both of whom pretty much ignore me these days unless the treat bag shakes or they hear me in the kitchen and think food might be involved. I could leave for six months, they wouldn’t notice, so long as they were fed twice a day.
I don’t think anyone cares to notice how unsupportive they are being. If you’re a shiny, happy person, you want to surround yourself with others like you. You don’t want to delve into the darkness and look deeply at someone with depth. That’s fine. I am better off without your bullshit. What you send out into the world comes back to you threefold. I listen to people and I give with my whole heart. I care, even when no one else bothers to do so. Faced with something that cannot be cured or fixed in any way, I am able to fully see how cruel and hateful people really are. And I am closing ranks in terms of my friendships and the people I consider to be anything in my life at this moment. I cannot imagine not reaching out to someone and offering support, but as I have noticed, people truly DO live on their own planets. I am walking around with the pin from everyone’s hand grenade. They just don’t know it yet.
For the record: I’m not stupid, or blind. I noticed the drop in subscribers the second I was super honest in my last few posts. When am I NOT honest? I’m not going to apologize to ANYONE because there IS a trigger warning for those who cannot handle anything too deep. I get it; we all have our issues, which is precisely why there was a warning. If you see a trigger warning, STOP READING. Come back when I’m discussing something funny and lighthearted. In all fairness, it was the first time I’d ever used a trigger warning in four years, so please, give me a break. This is MY safe space and I am going to be as honest as necessary here. You can stick with me or you can unfollow or unsubscribe. I’m not going to chase you down the street. I’m not desperate. I know who my readers are.
For every two people that disappear, twenty more show up and thank me for being honest and sharing my story so that they don’t feel ashamed in sharing theirs. I have received more love from Twitter followers than from any other social media platform I use.
I’m going to keep being me. I’m going to keep advocating to the best of my ability for change and I am going to keep speaking my truth and telling my story. I’m not going to allow others to stigmatize my pain or what I have been through. You can read my work, but ultimately, you don’t know me. You know a small percentage of what I share, but the people who’ve been with me for years and years, those are the people who know just how real I am. The people who’ve met me and spent time with me know who I am. The people who text me daily know who I am. The people who can call me at three a.m. for anything know who I am. The select few who get to share certain aspects of my life are the people who have made an effort to be a real friend to me, and for that, I’ll always be grateful.
You can sit and judge me ’til kingdom come for being honest, but the fact of the matter is, you have NO fucking idea what it takes for me to get out of bed each day, so please, judge yourself first. No matter what I face, you’re probably not as strong as me. I’m not ashamed of my reality, and I won’t allow anyone to make me feel bad for things outside of my control.
copyright © 2017 Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.
**Potential trigger warning**
“Exigo a me non ut optimis par sim, sed ut malis melior – I require myself not to be equal to the best, but to be better than the bad.”
I think my doctor is a compatible astrological sign and/or is perhaps magically able to defuse angry women. I realize sometimes it’s a little like talking to a cornered animal or a small child, except when it’s me, because I can’t be likened to either. I’m more like a venomous tornado; if tornados could have that additional level of power.
I genuinely give him credit because he handled my appointment with grace, class, ease, and owned his mistake. I can count on one hand how many doctors I know who would have owned up to a major error. He’s maybe one of three, if that. He is in the teeny, tiny minority because he has managed to maintain his humanity, sense of humor (I’m pretty certain his sense of humor is one of the reasons I like him so much. I can genuinely appreciate someone who has the ability to match my level of sarcasm, snark, and wit. It’s rare.), and the ability to stay grounded. I hope he never changes, because it would be a damn shame. I walked in enraged, and walked out laughing. I’m not that moody, not even for a Scorpio, but again, refer to my opening line.
I spoke, he listened, and we discussed possibilities for me to meet with someone who fits the criteria of what I need moving forward. He could have blown me off; instead he tried to problem-solve, and that is going above and beyond in my eyes. A far more jaded doctor would have passed me off to someone else, simply for being honest. God forbid you point out to another human-being that there’s a flaw in the system, or that they, themselves, are not perfect. Denial is not just a river in Egypt for some.
I’m proud of myself for handling this without reverting back to the old, angry version of myself who definitely would have handled things in a much more brusque manner, and brusque is soft considering it isn’t my original choice of words. Despite being angry, I was calmer than I thought I’d be once I sat down. I know the initial look on my face was anything but cute, but that frosty demeanor is my usual, unapproachable “Don’t fuck with me” look. I have scared postal workers with that expression; I know it’s not a good face. My doctor, all credit to him, seemed concerned, but unphased. He knew something was wrong, he just didn’t know what it was. Once he heard me out, everything was okay. In no way, shape, or form was he pacifying me, nor did he come off patronizing. I know the difference, and I would have walked out if he’d tried it. He’s too smart for that level of nonsense, and he earned another layer of my respect for keeping things real.
I know a lot of people would not have gone back. Many would not have been able to go back and be honest with him, but I’m no ordinary patient. I believe in full disclosure, even if I keep certain things private and keep pieces of myself to myself. I still don’t believe in accepting bullshit from anyone and eating it politely with a knife and fork. That’s not my style, nor will it ever be. I lack the ability to bite my tongue. I’d rather be honest and say what I’m feeling, as opposed to keeping it inside. That’s not healthy.
As I write this, it seems as though my ulcer is acting up once again, so I definitely don’t have time to hold any more stress or anger inside my body. I need healthy outlets, and writing has always been my first line of defense. It’s one of the clearest, most concise forms of communication. You don’t write as long as I’ve been writing if you don’t have something to say and have some serious talent to back up the words, otherwise, words are just that; words.
Did I feel better walking out of this appointment? A little. I’m glad I was myself and got the majority of the anger out of my system, but ultimately I still came away upset, just not at the doctor.
He admitted he wouldn’t have asked me certain questions if I’d looked more closed off. If I had looked like I had a wall up, he wouldn’t have dug so deep. Apparently my “packaging doesn’t match my pain”, his words, not mine. I do like him, so I let it slide, but that comment stayed with me for days and it’s going to bug me.
I immediately wanted to point out that just because a woman has makeup on, it doesn’t mean she’s an open book. Yes, I answered his questions. I did side-step a few, whether he noticed or not is another subject entirely, however, is wearing makeup what’s hindering me in getting proper care? It made me wonder if this has been an issue for the past ten years or so; the simple fact that I don’t walk into doctor’s appointments looking like death, which is usually how I feel on the inside. Do I need to walk in a drooling, incoherent mess? Is a face REALLY all people are paying attention to?! Is everything artifice? I do believe it’s called an “Invisible Illness” for a reason. Thirty minutes of my time, or less, to look human may seem ridiculous, but that time calms me down so I actually go to the damn appointment. Some doctors recommend coloring books to their patients as a form of therapy. Well, makeup is art therapy for me. It wasn’t even my best work, it was just mindless self-expression. Let’s not judge the broken, pretty mess by her “packaging”. Let’s not make assumptions. It sort of makes me want to show up in sunscreen and mascara next time, just to screw with him. However, that’s my “It’s over 90 degrees and I’m going to the grocery store in sunglasses” look. I try to look a little more human and pulled together when I’m face-to-face with someone. Not because I am trying to impress them, but because it’s something I do for me.
In hindsight, I realized that nearly all of my doctors, both past and present, are men, save two. I read a report about myself once that said I was “impeccably well-groomed” and it angered me. Obviously the doctor who wrote it has zero idea what it takes for me to be so “impeccably well-groomed”. I have an appointment in August, but I’m not about to ask another woman how she feels about my eye shadow blending skills. <rolls eyes> The first time I was there, the nurse went on and on about how good I smelled. That’s such a girl thing because my friends do it all the time with me. Women notice things that men do not. Men are more visual, but I don’t wear makeup for men; I wear it for me.
In my dealings with my beauty blog, I have sponsors, so I’m occasionally paid to write honest, unbiased reviews and I’m constantly trying new products revolving around hair, nails, skin, and makeup. It’s something I do for fun, something I hope will one day become more. However, the pain I experience has already held me back these past few years in terms of expansion, of starting a YouTube channel, and branching out. I re-branded last year, but my confidence levels are nonexistent, so if I’m not comfortable posting a photo of completed work to Instagram, then I’m definitely not ready for a camera in my face 3-4 days a week when I need to be filming.
Despite support from friends and family that I am definitely skilled enough to do it, I don’t feel ready. But does that mean I should be taken less seriously when seeking medical help? NO. Don’t judge a book by its cover. Or in my case, its skill-set. That’s not even 1/100th of what I can do in this world, and by judging me for it, you’re taking me down to less than a millimeter. That’s an unacceptable thought process. I personally know some of the most stunning people who are suffering just as badly as I am, and if you didn’t know them, you wouldn’t know what is going on because they have trained themselves to fake smiles and laughter. I will never fake a smile, not will I fake laughter or any other emotion, but yes, I will use an art form. I assure you, it’s not a mask, it’s just product.
After my appointment someone asked how I was feeling mentally, and I said “Let’s face it; I’ll never be okay. This is not fixable. Maybe if someone had done something to help me when I was six, or seven, or eight, I’d be okay now, but they didn’t. I feel neglected. I feel like my life isn’t my own. No one should have to carry this pain with them, this knowledge, and have to keep on living.” I then realized I’m deeply upset, and there’s no fixing it. I could go to a hundred doctors and there’s no cure in sight. I don’t know if there ever will be. There are always new medications in the pipeline, but a cure? No one ever talks about that, do they?
Ultimately, I am who I am; imperfect, shattered, hilarious, loyal, honest, goofy, inappropriate, sharp, creative, determined, the family protector, a permanently exhausted night owl, incredibly direct, a girl’s girl to the core, the person everyone turns to in a crisis or for advice, the girl “most likely to take a bullet for you”, the person described as “part lawyer/part doctor/part pitbull”, the psychic/spiritual guru for friends and for many of my close family members, mother to Cat and Kitten, a kickass Godmother, a truly amazing sister, an introverted extrovert, the girl who’ll sing anywhere because she hates wasting her voice training, the very best friend anyone could ever have, and the last of the matriarchal cooks in my family. I wear so many hats and own so many titles. That’s my “normal”.
In all the positivity, there is also a lot of fucking pain. You can’t mask that. No one sells “You’ve been through hell” concealer (I’m trademarking that, so don’t get any cute ideas.), or everyone in this world who suffers from an invisible illness of any kind would be stocking up. I look in my own eyes and see it. They may look sparkly and green in the right light, to the right person, but to me, that’s predominantly a sign of intellect and personality, nothing more. I have a dark, twisted sense of humor. People either enjoy it or they stare at me and say “I don’t get it.”, which usually results in the response “Bless your heart.”, mostly because I don’t have time to explain it to someone if it goes over their head. I’m quick-witted and even quicker with my sarcasm. You either get it or you don’t, but it’s not intended to be offensive, unless my tone changes or I intentionally speak a different language in
front of you.
Suffering from depression isn’t just abysmal highs and lows. For me, it’s living in pure darkness and trying to find shards of light scattered here and there. Light comes in many forms for a creative type. I love learning how movies are made. I am fascinated by certain aspects of history. Certain artists intrigue the hell out of me, and they remind me I should be painting twice a month. I actively study parts of the world that most people will never see in person. I learn new languages. I have traced my ancestry back to 85 B.C., which was no easy feat, and I’ve researched cats so thoroughly that you can ask me anything about domestic or big cats. I never stop learning. And yet, I openly and honestly discuss suicide in the same breath. I don’t believe in hiding it. I don’t believe in masking the pain or lying. I’m not going to sweep it under the rug and pretend. Pretending is what gets you into trouble.
Last month, one of my cousins tried committing suicide via overdose. It deeply affected her oldest daughter and other family members; justifiably so. While they are all taking it personally and questioning the kind of person she is, offended that she lied to them or simply didn’t disclose how badly she was suffering, I’m the one person who seems to truly understand how much pain she is in to have hit rock bottom. I know how awful it is, and I refuse to sit in judgment of her for it. In fact, all I want to do is help her. I’m sick of their attitudes. They’re acting like it’s all about them when the truth is; her pain has NOTHING to do with them and EVERYTHING to do with being strong for decades and finally breaking down. I didn’t realize how deeply it affected me until I broke down in the shower one day. I am deeply concerned, especially now that she is back in the hospital and continually tries to manipulate doctors, friends, and family into letting her out. This is the person in the family who would personally kill any of us if we tried to do something as stupid as what she did, so I KNOW this isn’t her, this is merely illness and an extremely dark, low point. What they deem as selfish, I see as a diamond in a pressure cooker. That’s precisely how a doctor once described my own situation to me. I try to remember those words whenever I reach my breaking point, but it’s not easy to hold on to mere words when your support system is nonexistent.
I spend 97% of my time alone, in pain, so how could I not think about suicide? Between the stress and the isolation, it’s hard not to. and I refuse to lie or pretend. I’m not good at being fake.
There are days when I’m taking a long walk, just to clear my head, and there’s this little voice hoping I get hit by a truck or a bus, or a car not paying attention. Unfortunately with my luck, I’d be in a body cast and no one would ever think anything except that the driver was an idiot who didn’t see me. No one would ever think I had anything to do with it, and for the most part, I likely wouldn’t be thinking about it either because I have “city brain” and I’m very careful when I’m walking, but there have definitely been moments where I’ve nearly been hit because a driver wasn’t paying attention and each time, a large part of me was sad they stopped or that I was paying attention. It’s sad to admit, but it’s also honest, and human. I despise my life and almost everything in it. I find it pointless to pretend that it’s okay. I am 1000% NOT okay. I cannot remember a time when I was okay. Passable? Yes. But okay? No. Hell, I don’t even know what okay looks like or feels like. When people ask how I’m doing, I don’t lie and say I’m okay when I’m not. You know how cashiers and customer service reps often ask how you’re doing? My new response is “I’m too honest for that question.” I don’t play the game and say “I’m good.” or “I’m okay.” because lying is not my first instinct, and when people lie to my face, I look them in the eye and say “Do you want to try that again?”
As I constantly have to explain to other people, my ties in life are different from theirs. My Grandparents are gone. My parents are gone. I have a handful of cousins I am close to, and in truth, I don’t feel like I can discuss my life with them because they’re so wrapped up in their own lives (quite frankly, it’s ALL I hear about. Sometimes they talk at me, and don’t even ask how I’m doing. This can go on for months at a time.). I recently lost my Great-Aunt, who was the last tie I had to my father’s side of the family in this country, aside from my cousins (her grandchildren) who I am currently trying to tune-out because they’re stressing me out with every phone call or text message. I haven’t heard from my brother in months and constantly live in fear that I will get a phone call from a hospital, the police, or the country coroner’s office. I come out of my skin every single time my phone rings and I don’t know who the caller is. Every day of my life, I question my existence. Between migraines, the physical pain, and the emotional pain, there doesn’t seem to be much of a point in sticking around. Why would any sane person allow themselves to go through this kind of torture day in and day out?! Suffering to this extent is inhuman. I wouldn’t allow Cat or Kitten to suffer like this, so why am I allowing myself to live in such a manner?
I used to stop myself from acting on these thoughts because I was afraid my brother would be the one who found me, and I couldn’t do that to him. His best friend committed suicide in 2005 and it left him devastated. I didn’t want him to find his sister dead; I was certain it would break him. Especially after we lost our parents. My brother isn’t me; he’s not the strong sibling, nor will he ever be. One of my best friends lost her brother to suicide, something none of us could ever have anticipated, and she has told me that no matter what I am going through, it’s a permanent solution to problems that are “temporary”. However, you can’t say that to someone who has spent the majority of their life in agony and who rarely, if ever, knows happiness.
Nothing I’m going through is temporary. It is all quite permanent and very real. I don’t think my other friends are aware how much I’m hurting, nor has anyone ever inquired. I’ve only recently realized how one-sided our conversations are. I support and strengthen them, but who supports and strengthens me? My relationships and friendships are solid, but I will always be the black sheep. I’m needed when I’m needed, but where do I go when I’m in need? To a doctor and/or a licensed therapist, and right now, I’m not okay to sit with a therapist weekly, or even bi-weekly. I am gutted, and I don’t have the emotional capacity to sit and discuss anything when I feel like an empty shell. I don’t like wasting someone else’s time, nor my own. My last two therapists dropped out of my life during really awful periods when I most needed support. The last one disappeared completely during one of the worst times in my life. I genuinely trusted her. I’m not ready to be hurt like that again, nor will I allow it. She was the only therapist I’d ever liked, and her not so much as returning a call or referring me to someone else was incredibly unprofessional and rude. It’s something I’ll never forget or forgive. There is always a professional way to do something. It’s one of the first things I learned in business, and I was eight years old at the time! I cannot forgive stupidity when I know that the other person knows better.
So my appointment went well, and I’m glad for that. I genuinely DO like this doctor. I wasn’t kidding about following him to China. That’s one of the highest compliments I can pay him. I’m certain he knows it was genuine. He will be lucky if I don’t super glue myself to his leg at my last appointment, and for some reason the image of that in my head is hysterical beyond words. Oh, Lord, RELAX! I’m joking. Sort of.
He’ll be getting one hell of an online review when I get a moment to collect my thoughts. Not because I have to write one, but because he deserves it. I’ve never written a review for a doctor before. I’ve recommended my former neurologist to people in need (He is genuinely a kind, caring doctor who did his best for me.), but this is different. I want him to have an amazing review moving forward on every website I can slap one on, and I’m just insane (and sane) enough to get one posted everywhere known to man. I don’t actually know anyone who could write something better, and that isn’t ego talking, it’s mere fact.
For obvious reasons, I have protected his name this entire time. As I’ve said before, many times, “privacy is not a setting”. I adhere to laws and boundaries, even if some of them are personally defined. After all, this is still the Internet and while I do talk about a lot of things openly and honestly, I’m also an incredibly private person.
Even when he stops being my physician, I’m still going to feel protective of him; I discovered this accidentally. A family member made some outrageously derogatory remarks to me about him while I was in the process of writing this, and I’d never felt more defensive and protective of a doctor in my entire life. You would have thought she’d taken a shot at my mother, which is one thing that, to this day, is very likely to get you punched in the fucking face. Thus far, no one has deigned to do it to my face. One person made the mistake of doing it via e-mail, and I decided it was an act of pure cowardice not worthy of a response. People know that if they did it to my face, I’d kill them and tell God it was an accident.
My reaction to this family members’ truly insane comments regarding my doctor were to take a deep breath and pause before saying “Did she actually just say that to me and think I’d accept it?” However, she had, and my exact words were “I’m a very good judge of character and unlike you, I trust my judgment and intuition. Number two, this is someone you have never met, spoken to, or spent five minutes in a room with.” I was SO angry, she’s damn lucky she was in another state, or there’s simply no telling the level of fight it would have escalated to.
The following day, she casually contacted me like nothing was wrong, and I informed her that it was incredibly disrespectful and inappropriate for her to take a shot at my doctor and attack a stranger based on her personal experience of working in a hospital. You can’t go around assuming that every doctor is egotistical and arrogant. Far more was said than just that, and I refuse to give the insanity credence by repeating it. However, nothing I said was negative or led her into this series of hateful, rude, callous, inappropriate, man-hating remarks. She knows less than nothing, so it came completely out of left field and I was NOT having it. She did end up apologizing to me for her outburst, calling it an “occupational hazard” from watching the behavior of the doctors who work at her hospital, but that’s a blanket, bullshit excuse and she knows it’s completely unacceptable to me. I’d love to chalk it up to her usual idiocy, but much like attacking my work, which I’d never allow anyone to do, you do NOT attack this doctor. I may have been mad at him for an isolated incident which she doesn’t know about, but I did not disclose anything more than facts when I wrote about it, and she doesn’t read anything I write. This is someone I respect. That means he’s done something to earn it.
When you find a good doctor, however brief the encounter may be, it’s important to let them know which qualities they possess that they need to hold on to in order to survive as medical professionals. They might lose sight of that from time to time, so a solid reminder will remain in the back of their minds. Like anything else in life, there are always things that bring us back to the here and now and remind us of who we are during challenging times. No matter who we are or what we do for a living; we all have those moments. No one is perfect.
It’s a sad jungle out there. Finding someone amazing who cares and genuinely wants to help people, and isn’t egotistical, is very similar to finding a unicorn. Apparently, they DO exist in the medical community if you search hard enough. There’s an immense difference between having a healthy ego and having a Donald Trump complex.
In one of the most screwed up healthcare systems in the world, anyone that becomes a medical doctor in the United States has just completed four years of medical school and, depending on their chosen field, there is a 3-7 year residency or fellowship process after graduation. It puts the average physician over $175,000 in debt, if not more. Yes, they are choosing to become doctors, and no, most of them don’t go around earning our respect as patients for many reasons. One of which is insurance companies dictating far more than they should be allowed to. This has been going on for years, though. It is NOT all related to the ACA. However, there are still so many good doctors out there. Bedside manner isn’t a given. It is often learned, and so much more is learned by taking time out for your patients. In their efforts to help people, they can become doctors that focus solely on research or they can practice medicine based on their field choice in the state(s) in which they are licensed.
What makes this doctor stand out from all the rest? He’s fully engaged. He’s not distracted, dismissive, or daydreaming while you’re talking. He is 100% in the room. He’s not only listening, he hears you. Given the chance; he never would have given up on me. He’s simply too determined. You can fix broken bones, and I am using that as an emotional metaphor. Emotional bruises heal, eventually. But a doctor not giving a damn whether you make it or not? That stays with you forever. I know, because I’ve lived through a plethora of doctors who didn’t give a rat’s ass about anything, least of all me. I was never a person or a patient. They couldn’t be so bothered to return a phone call, or do anything other than rush me in and out of their office. They had no intention of ever helping or making a difference, but if you’re not an experienced patient, you don’t know the signs of what separates a doctor from being a licensed physician to someone who has greatness in them. I’m well-versed, so I do know the difference.
I lucked out. I found the needle in the haystack on my first try here in Massachusetts, but he is leaving, and I’m all out of super glue. I am glad our paths crossed. I think I’m a better person for it. Broken, pretty mess and all.
Yes, he knows I’m a writer and that I wrote the angry piece. I was incredibly honest with him. I will not be so forthcoming with the next doctor, or any others, up the road. Trust is something you earn, and I cannot give of myself again. He is getting a copy of the first piece, and this one, at my last appointment. He’ll probably never know how much his ability to care and treat me like a human-being undid damage every other doctor did along the way. All I can offer is my respect, appreciation, and heartfelt thanks.
Aut viam inveniam aut faciam-“I shall either find a way or make one.”
copyright © 2017 by Lisa Marino & Blackbird Serenity, LLC. ALL RIGHTS RESERVED.