Republished on The Mighty on 5/4/20.
Republished on Yahoo News on 5/4/20.
Republished on The Mighty on 5/4/20.
Republished on Yahoo News on 5/4/20.
Not everyone understands what it is like living with a mental illness. I get that. Most people, at their core, mean well and are trying to help in one way or another. Whether they are attempting to be supportive or trying to snap someone back into their perceived “reality”, they just don’t know what to say. I understand that completely, too. But using tired old cliches about life that don’t apply to living with a serious illness does not help at all. Nor does it help to offer outdated advice that has been proven to be both ignorant and ineffective. They do much more harm than good. It not only minimizes our condition and our struggles, but it also tells us that you neither understand what we are going through nor do you take our illness, or us, seriously.
Please do not tell us that “everyone has problems sometimes“, “into everyone’s life a little rain must fall“, or that “nobody said life was fair“. Likewise, please don’t tell us “it is what it is” or “everyone gets depressed sometimes“, as if our diagnosis is an everyday, trivial, meaningless bit of happenstance that is unimportant and should be paid no mind. A mental illness is not an average, run of the mill problem, a typical bump in the road of life that everyone faces at some point and is easily cast aside or overcome. It is a medical diagnosis, a medical condition that drastically affects every aspect of our lives. You wouldn’t tell someone with cancer that everyone has problems sometimes, laughing it off like it was nothing. You would show an appropriate level of concern over their health and well-being. You would encourage them to see a doctor and take care of themselves. You would be supportive. You wouldn’t dream of minimizing their condition because, left untreated, it could have deadly consequences. So could my mental illness and it deserves to be treated in the same regard.
Asking us if we’ve “just tried being happy“, telling us we “need to just learn to focus on the positives” or otherwise suggesting we’re not trying hard enough misplaces the blame on us for our diagnosis. The patient is never to blame when their body goes haywire and runs amuck. We understand that sometimes our bodies malfunction, become unbalanced, and horrible things like tumors occur. You can’t will away cancer with a positive outlook and trying harder won’t make tumors disappear. The same goes for mental illnesses. We don’t tell someone with cancer that it is “all in their head“, “mind over matter“, and expect them to become healthy again by sheer willpower alone. We encourage them to see a doctor immediately, get everything taken care of and treated so their body can work properly and be healthy again. Untreated cancer can eat a person alive from the inside out, deteriorating their health and destroying the quality of their life in every way. So can mental illness. The only difference is cancer mainly attacks and destroys the physical body while mental illnesses primarily attack the mind.
Please don’t judge us on our appearance, telling us that we “don’t look sick” or that we “just need to smile more” as if our diagnosis is even remotely dependent on our outward appearance. Also, please don’t tell us that we “don’t look all that sad to you” or that we “looked just fine the other day” because we have briefly managed to put on a brave face or wear a mask to hide our pain. Having a good day here and there does not negate all the bad ones. Invisible illnesses are still illnesses. Like many other serious health conditions inside the body, you cannot often or easily see mental illness with the naked eye. Not seeing a tumor growing inside someone does not make it any less real or dangerous. Not seeing a diabetic’s pancreas malfunctioning does not mean it is not happening or that they do not need treatment. Someone with cancer or another serious medical condition occasionally smiling, laughing or briefly enjoying life does not mean that they are instantly cured and tumor-free. Just because you cannot see our mental illness does not mean we are not suffering.
Asking us “why can’t you just be normal?” or suggesting that we “need to stop feeling sorry for ourselves” not only blames us for our diagnosis but treats us as if we’re somehow broken or flawed and it is all in our head. Nobody asks to have a mental illness nor does anyone want to be sick. We are not doing this to ourselves. We are not having pity parties. Please don’t suggest we’re just looking for attention or tell us that “the only one we’re hurting is ourselves” either, as if we’re intentionally sabotaging our own happiness by entertaining the absurd idea of some make-believe malady. Mental illness is a very real medical diagnosis, one that is often completely beyond our control. Our behavior did not cause it any more than a person’s attitude or imagination can cause tumors.
Please do not suggest we should just “snap out of it and get over things already“, either. A person cannot snap out of a mental illness diagnosis any more than they can snap out of diabetes. There is no set time frame that someone should be better, or even show marked improvement. Like diabetes, a mental health diagnosis often lasts a lifetime. And the healing process with most illnesses is not linear. A diabetic can alternate between periods of stability, and episodes of sugar spikes and crashes, dangerous highs and lows that drastically and dangerously impact their health. Similarly, even when in ongoing mental health treatment, a series of good days can be interrupted by periods of downward spiraling or numbness, and worsening symptoms as we attempt to balance medications and work through both past and new traumas. Along the same lines as the fact that we refuse to take the blame for our illness, we are also under no obligation to heal on anyone else’s schedule or whim. It is our illness, our treatment, and we will take as long as we need to take to heal fully and properly, even if it takes a lifetime.
Do not remind us that “every cloud has a silver lining” or tell us to “look on the bright side“, suggesting that we need to look for something positive at the core of our struggle. Likewise, please never tell us that “what doesn’t kill us makes us stronger” or tell us that “it is God’s will“, as if our suffering was some divine gift or that it will be worth it in the long run. Again, it is an illness, a medical diagnosis. You would not confront a diabetic who must have their feet amputated due to their condition and suggest that they would somehow come out stronger for their loss. You would not imply to a patient who cannot keep down any food because they are undergoing chemotherapy that the silver lining is that they always did want to lose a few pounds. You would not tell anyone that their illness was a blessing in disguise, that they should be grateful for their suffering and pain. Comments like those would be not only wildly inappropriate but also extremely insensitive, as well. You would offer the person suffering your compassion, sympathy and support. People with mental illnesses deserve the same. There is nothing positive about our diagnosis or our struggle so please don’t insist we look for a silver lining or a bright side that is not there.
Please don’t tell us that “other people have it worse“, as if our struggle is insignificant because someone else has struggled more. Don’t ask us “what do you even have to be depressed about?“, expecting us to justify our diagnosis or quantify our suffering so you can determine its validity. A mental illness is a bonafide medical diagnosis that deserves acknowledgement and actual medical treatment regardless of its severity in comparison to someone else’s. It is always a serious health condition that can continue to worsen if left untreated. You wouldn’t shrug off anyone’s cancer diagnosis as trivial or be so unsympathetic as to suggest their tumors were insignificant because someone else had larger ones. Cancer is always taken seriously. Mental illness should be, as well.
If we trust you enough to open up about our diagnosis, please don’t shut us down by telling us “there are just some things you just shouldn’t talk about” or reminding us that “some things should be kept private“. That is ignorance and stigma talking. Yes, we understand that mental illness is uncomfortable to discuss. So is any other serious medical diagnosis. The difference is that families and friends will discuss other illnesses and the impact they will have on everyone’s lives. We sincerely apologize for any discomfort our diagnosis might give you, but please know that we are not confiding in you hoping you can solve it or make anything better. We are sharing our diagnosis because we consider you an integral part of our lives and we want you to be aware of everything that is going on. Don’t tell us that we shouldn’t talk about mental illness as if it is something we should be ashamed of having. The biggest reason this diagnosis has become so rampant in society today is because no one talked about it for far too long. No one talked and nobody sought treatment. But silence won’t make the problem go away. Health issues don’t vanish because you refuse to acknowledge them. It will only make it worse.
Please stop shaming us for our diagnosis altogether or our efforts to seek treatment. Don’t tell us that “all we really need is some fresh air and some running shoes” in order to feel better. Don’t tell us that “only weak people rely on medication” or suggest we try vitamin regimens, scented oils or other homeopathic remedies instead of what we have been prescribed. We have seen actual doctors. Medical professionals have given us a verifiable medical diagnosis and prescribed us the appropriate medications to treat that diagnosis. You wouldn’t shame a diabetic for using insulin to balance their body so please stop shaming us for taking our prescriptions to balance our minds. You wouldn’t tell a cancer patient that they didn’t need chemo, to just go for a brisk run or take a nice, long bath instead. That is because it is widely accepted that chemotherapy is used to treat cancer and insulin to treat diabetes. If you are willing to accept other medical diagnoses and treatments as valid, please accept ours, as well.
Please don’t attack us, demanding to know “what have you even done with yourself lately?” or otherwise question why we are not able to function as well as a healthy person. Don’t interrogate us about what we have and have not accomplished recently, either, as if our level of productivity must meet your standards or our activity must be on par with yours. Having a mental illness takes a lot out of a person, both mentally and physically. It is perfectly acceptable for someone who has just undergone chemotherapy to spend a day in bed if they so need it. If a diabetic has a sugar crash and feels under the weather, others will suggest they go lay down and feel better. Healing and recovery time is acceptable for all other illnesses. It should be for mental illnesses, too.
For so many years, mental illness was treated as something shameful, something you just didn’t discuss, something whispered about in dark corners. With the continuing rise of suicides, addictions and other mental health crisis in our society, mental illness is being spoken about today on a scale previously unimaginable. I understand that it might take some time for everyone to fully understand how to openly discuss our diagnosis with both compassion and respect after being shrouded in secrecy and stigma for so long. When unsure how to proceed, many people turn to old cliches and outdated advice that they believe have stood the test of time. However, many of those statements and sayings are not at all appropriate or applicable to mental illnesses. If you are unsure what to say to someone with a mental illness, a good place to start would be to ask yourself if you would say those words to someone else with any other serious illness. If you cannot imagine saying it to someone with cancer or diabetes, for example, it’s a good bet that it is not an appropriate response to our diagnosis, either.
After all, people with mental illnesses are not asking for special treatment. We are just asking to be treated with the same courtesy you would treat anyone else who is ill.
Everything had been building up for months, years.
It was not that I didn’t have wonderful things in my life to be grateful for. I had healthy, compassionate, intelligent children that were growing into incredible adults before my eyes; I had reconnected with my first crush ever who has turned out to be the love of my life and we have a wedding to plan; I had finally found my calling as a mental health advocate and had the start of a promising writing career; I finally understood my struggles with my mental illness, having found a clinic that not only helped me to find the answers I needed, but also actually gave me hope for the future. In so many ways, my life was finally looking up.
However, it was overshadowed by a lifetime of struggling. I had been battling my own brain my entire life. And in recent years, the government and my insurance company, as well. It felt like all I ever did anymore was fight everyone, again and again. It seemed never-ending. I was so exhausted from fighting all the time, never getting to catch my breath, never getting a break.
Add to that discovering not one but two meningioma tumors on my brain. I had survived years of abuses that left deep scars that would never fully heal. My fiance and I were facing a possible pending eviction caused directly by the government’s prolonged inaction in my case and direct refusal to comply with a judge’s previous fair hearing decision in my favor.
The straw that broke the camel’s back, however, was the fairly consistent presence of someone toxic in my fiance and my lives under the guise of one of his childhood friends who was hell-bent on causing problems in our relationship, repeatedly trying to split us up.
To give a little background on the situation, she had known him since she was thirteen and had a crush on him for close to thirty years, bordering on stalkerish. When he was staying with his parents following the end of his marriage, she would intentionally show up hours before he was due home from work and say she would wait in his bedroom for him as an excuse to sleep in his bed. Though they never had any type of a relationship because he never saw her THAT way, for years, she regularly borrowed hats and shirts from him and kept them, much like a girlfriend would normally do. Despite having a crumbling relationship at home she should have been devoting her attention to, she tried repeatedly over the years to supplant herself into my fiance and his family’s lives in any way she could whenever she could, often causing drama in the process. Though he later forgave her to an extent, she even played a crucial part in the break up of his first marriage.
From the time we got together, she had been trying to cause problems between us and split us up. The first time I met her was a month into our relationship, shortly after his father went into hospice. She pulled me aside and tried to convince me that I had no idea what I had gotten myself into or the mess he was going to be so I should just walk away before I got in over my head. She told me he was mentally unstable, that she knew him well enough to know I could not handle what was in store. She seemed thrown aback when I told her I had known him longer than her and I was in it for the long haul.
When she could see I was not going anywhere, she switched tactics. Over the course of the next year, every single time she came over she would make negative comments about me and my mental illness, lecturing me that I needed to stop being lazy and do something with myself and my life. Whenever my fiance and I would both jump in to defend me and attempt to explain the disability diagnosis my doctors had given me, she would interject that she worked in mental health, too, and she “knew what she was talking about”. She worked in a mental health care adjacent position, as a glorified overnight babysitter at a facility that housed mentally or physically disabled adults, a job you didn’t even need a high school diploma or any certification to get, yet she swore repeatedly that she knew better than all my doctors over the years. She frequently trivialized my mental health writing as a waste of time and criticized everything from the cleanliness of my apartment to my cooking, as if nothing I did even remotely met her standards.
As if the constant attacks were not enough, she also was constantly attempting, albeit admittedly very poorly, to blatantly flirt with my fiance in front of me. She would try to run her fingers through his hair and insist he let her cut it, to which he would pull away and say I will cut his hair when he needs it done. When he stopped shaving for no shave November and the couple months afterwards, she commented repeatedly that he should shave because he looks so much better clean shaven, that she prefers him that way, even offering to do that for him, as well. She was forever reaching out to touch him, swat at him or rub him with her hand while she talked, trying to take sips out of his drinks like a girlfriend might do and regularly found excuses to lift her shirt or drop her pants in front of him under the pretense of showing off numerous bug bites and bruises. She would often announce wildly inappropriate things that people wouldn’t normally discuss with friends, like she had just shaved her nether regions or talk about having sex, watching porn or masturbation when she came over.
We tolerated much more than we should have because honestly we felt sorry for her. She was always desperate for attention and, according to her, her problems were always ten times worse than everyone else’s. For example, when we attempted to explain about my doctors finding my brain tumors, she cut us off by saying, “That’s nothing! Did I tell you I had to bring my car back to the shop again?!” as if car problems were somehow worse than brain tumors. She was loud, obnoxious, crass and crude with no concept of respect or boundaries, always saying or doing whatever she could think of to get all eyes on her. She was always talking badly about someone when she came over, usually my fiance’s ex-wife, even though she was supposedly still good friends with her, to the point where we began watching everything we said around her to avoid becoming part of her gossip. She also had severe substance abuse issues. In a year and a half of seeing her once to twice a week on average, I never once saw her even remotely sober regardless of the time of day – she was always drunk, high or both. We knew from everything she had talked about that things were bad for her at home, that her relationship was in shambles. A lot of people had written her off already over the years for her behavior but we understood that she had a lot of issues so we tried to cut her some extra slack.
I had tried my best to be kind to her. On more than one occasion, I took the time to show her sons my sugar gliders and explain more about them. I even watched her youngest once for over an hour while she ran an errand. If we had leftovers when she stopped by on her way to work, I would send her with a plate or bowl. She would regularly fill her purse from treats I had put out in snack bowls. I baked her family Christmas cookies and sent her with extra for both home and work. I once even lent her an old pair of pants that were too big on me so she had something clean for work when she stained her own. I listened sympathetically when she complained of relationship issues, health problems or other stresses, trying to extend an olive branch of friendship. I even did my best to overlook her steady barrage of flirtation with my fiance because I realized it must have been hard to see someone you crushed on for decades happily with someone else.
But despite all my attempts at kindness, both her attacks on me and her inappropriate flirtation with my fiance not only continued but steadily increased. What originally may have been one off-handed comment about her believing my disability was nonsense became full-fledged rants. She began making snippy and snide remarks and telling us to stop whenever my fiance and I were affectionate to each other as if she resented anyone else showing him attention or love. Over time, it had all became too much to bear. When my fiance and I began contemplating marriage, she declared we were not ALLOWED to both get married a second time because she had never even been married a first. When we officially announced our engagement, she responded by referring to me as (please excuse my language) his “fuck buddy”, saying outright that the only thing I did for him was give him my “roast beef curtains” and insist that he deserves better than me. That was the last straw and we agreed she was no longer welcome in our house or our lives.
For two weeks afterwards, she did not come around. Then late one night, well after one in the morning when we were already in bed, we heard a drunken knock at our kitchen window. We both knew exactly who it was because she was the only one we knew with the audacity to think that would be acceptable. I was livid and wanted him to tell her to leave immediately. He wanted to quietly let her in to avoid her making a drunken scene in our apartment building, to wait to tell her she was no longer welcome here another time, during more reasonable hours when she might be somewhat more sober and perhaps slightly more reasonable. Everything quickly escalated.
We were both beyond stressed at the time, not at all with each other but rather with life circumstances in general, topped off by our unwelcome, uninvited guest. Beyond all my own issues, he had been struggling terribly, as well. He had a lifelong battle with his own mental illness. In the last year, he had lost first his father then his job. The family dog that had been his parents’ for well over a decade had to be put down and he was struggling to keep his truck, one of his last physical connections to his deceased parents, on the road and in working order. We were both well beyond our breaking points on many fronts and the culmination of everything with her pushed us right over the edge. We fought terribly, something we don’t often do even in a mild sense. It may have been the worst fight of our entire relationship. Afterwards, I retreated to the bedroom to cry, locking the door so I could be alone.
I did not have any plans to commit suicide. The thought honestly had not even crossed my mind. I was not trying to hurt myself in any way. I loved my fiance and my children more than I could ever put into words and would never have wanted to hurt them in any way, either. I was hurt, angry and distraught over our fight, disgusted that we had tolerated someone so blatantly toxic for so long, and I was exhausted and overwhelmed with life in general. I just wanted to be alone, wanted to try to calm down, to catch my breath, to stop feeling like I was free-falling through a world where I was never allowed to just be happy, never allowed to just rest and be at peace.
I dumped the basket of pills out on the bed and fished out various bottles of my take-as-needed anti-anxiety medications. In between sobs, I took a few. Then I vomited.
Seeing the pills floating there on top, I took a few more to replace the ones I had lost. I continued to sob and to vomit. To vomit and to take more pills to replace the others.
At this point, I was no longer thinking clearly, caught in a nightmarish loop, wanting desperately just to calm down, to stop feeling like this, and to get some much needed rest.
Eventually, sleep came. I started to feel dizzy and thought to myself, “..finally.. they are starting to kick in..” It is the last thing I remember for almost two days.
I woke up a day and a half later in the hospital. He was seated at my bedside, looking ragged, like he hadn’t slept in days.
Baby! You’re awake! Oh my god I love you. I am so sorry about everything. How are you feeling? What do you remember?
I was confused and disoriented. On oxygen. Had a bunch of tubes and wires all over my body. It took me a few minutes to realize where I was and what was going on. I could not remember anything since taking the pills, crying and throwing up repeatedly. I was not even sure what day it was.
I can’t believe you don’t remember any of it. I had to kick down the door, to call the police.
My chest hurts.
I can only imagine. One of the cops did a sternum check, pushing really hard on your chest, hoping for a reaction to the pain. You were completely unresponsive.
My throat hurts.
You had tubes down your throat. They had to restrain you for a bit because you started to flail and grab at the tubes. You have no idea how much you scared me baby. What you looked like, laying there hooked up to all those machines, all those wires and tubes. I thought I was going to lose you. Please don’t ever scare me like that ever again.
I wanted to talk about it all, to explain, but my voice was raspy, my throat raw. It hurt to talk. I couldn’t stop coughing. I wanted to insist I hadn’t meant for any of this to happen, to swear I wasn’t suicidal like I had been all those years ago before we were even together. I wanted to apologize for scaring him, for fighting over stupid things like people who were inconsequential and irrelevant. All I could do though was cry as he held me close, my tears flowing freely with his.
I had lost a day and a half.
But more importantly, I tarnished our relationship in a way I can never take back. The sight of me laying there unresponsive, of being carted out on a stretcher, of my laying there as the doctors frantically worked to revive me, will forever haunt his nightmares.
I spent the next day in intensive care as they closely monitored my heart, followed by three days on a secure floor on suicide watch. Again and again, I tried to explain it all to whoever would listen, to insist I was not suicidal. However, protocol required a few days of observation no matter what was said.
My heart was constantly monitored, my vitals taken every few hours. My IV was moved numerous times as my veins collapsed and fresh bruises appeared up and down my arms. I was stuck in bed for the first couple days upstairs while I waited for nurses to find me clothes other than hospital gowns. The clothes I had arrived in had been cut off me in the emergency room when I arrived. I could not wear other clothes from home until after I was cleared for discharge.
I was not allowed many other items often taken for granted such as a phone charger or silverware. Well-intentioned staff reached out repeatedly to try to convince me life was worth living. Meanwhile, they rushed to confiscate any cans or other sharp items from meal trays and to take endless notes on everything I said and did to assist with my psychological evaluation. I had a constant companion, a nurse or aide to sit with me at all times to prevent me from possibly further harming myself. Though I was never by myself during those four days, I had a lot of time to lay in bed alone and think.
I was not suicidal but I have been in the past. I did not intent to harm myself, but I had in the past. Intentional this time or not, I found myself in the same place and, like my previous attempts in the past, it had not solved anything. On the contrary, it made everything much worse. It hurt the people I love, scared my fiance and my children to death.
I didn’t get any time to calm down, didn’t get that moment of peace I had desired so badly. The majority of the problems had not gone anywhere. I lost a day and a half, woke up in pain and discomfort only to face new problems created by my own actions.
I was extremely lucky just for the fact that I am still here to tell my story. I could have just as easily become a statistic that day. My story could have just as easily ended with my obituary, the words and questions of others left unanswered, adrift in the wind.
I cannot apologize enough for what I put everyone through. I feel stupid, ashamed, that I should have known better. There are no words that could adequately express my remorse. I would do anything to take back that night but there is nothing I could ever say or do that would erase the past.
I would love to say there is no excuse for my actions but when my depression and anxiety reach certain levels, I no longer always think clearly. I become increasingly overwhelmed, the world feels largely hopeless and I am no longer able to cope. Even when I am not actively suicidal, which I have not been for years now, I struggle regularly with suicidal ideation, not exactly wanting to die but no longer wanting to continue living my life the way it is, either. Though I never meant to fall apart like I had that day, unfortunately once I reach a certain point, I react before rationalizing the repercussions of my actions.
I would love to say there is an easy solution to this, that I could take a magic pill or think some happy thoughts and my mental illness would just fade away and disappear. I wish I could say it was a temporary phase even that I would eventually get over. My mental illness is caused in part by a genetic mutation. I was born with it and I will have it until the day I die. There is no cure for me. It is permanently hardwired into my genetics. I can receive therapy for past traumas and current issues, I can take medication to provide my brain with the chemicals my body cannot make itself, I can fill my coping toolbox with techniques and strategies for dealing with harder days and attend things like tai chi and yoga classes until the day I die. Yet I will always have a mental illness. It is a lifelong, permanent diagnosis for me.
Mental illness is my cross to bear. Though I truly appreciate that my loved ones are willing to stand by me and support me through my struggles with my mental health, it is not fair or right for them to suffer like they have for my diagnosis. Although I never intended to do so, I severely hurt everyone that matters to me. They all have tried to be compassionate and understanding, to forgive me for an illness that often wreaks havoc in my life, for a condition frequently beyond my control.
However, I am not sure I will ever be able to forgive myself.
Since getting out of the hospital, my fiance and I have not talked much about the incident beyond him being thankful that I am okay and asking me to please never scare him like that again. I have reassured my children that I am okay, as well, trying to minimalize the severity of it all to lessen their fears. Again, I wish there were some magic words I could say to take away the pain and panic in their eyes. I fear no apology will ever be enough.
It took almost a week before we could even sleep in our bedroom again. While I was in the hospital, he slept on the couch when he could sleep at all, the spilled pill bottles, vomit and towels still sitting where they were when the ambulance carted me away. I insisted on cleaning it up myself when I came home, my mess, my problem, but going into that room felt like crossing into an alternate nightmare dimension. Nevertheless, I fought my way through a bevy of anxiety attacks and breakdowns to clean it all up. Even after everything was cleared away, no trace remaining, we opted to sleep in the living room for the next week on our air mattress. We knew what had happened in there, we had lived through it, yet we were still not quite ready to fully face it.
The first couple nights that we returned to the bedroom, I couldn’t sleep at all. He continued to cling tightly to me all night while he slept, as he had done every single night since we returned home from the hospital, as if he was terrified that I would disappear forever if he let go for even a moment. I laid awake both nights, silently crying for the pain and fear I had placed in his heart. A month later, my anxiety still rises whenever I enter that room, my sleep restless and plagued by nightmares old and new.
I know I need to change many things, to put safeguards in place to prevent something like this from ever happening again. I cannot change the fact that I have a mental illness, but there are other things I can address, precautions I can take. I never want to hurt my loved ones like that ever again. For instance, no more locking myself away when I am upset. No more taking extra dosages of medication early, even if I have thrown up the dose I just took. No more tempting fate when I might be too emotionally irrational to think clearly.
I have a constant pressing need now to reassure him that I am okay, that he doesn’t have to worry. I catch him looking at me, watching me, more frequently now, and checking in on how I am feeling. We are trying to heal from this, to move forward, though I’m not sure we can ever completely move past it. He almost lost me that day. He is always going to worry just a little bit more now.
We have also agreed to remove certain toxic people completely from our lives, those who prefer to add drama and conflict rather than happiness and support. We learned the hard way that some people will take advantage of our kindness and tolerance, repaying us tenfold with cruelty and drama. The nail in the coffin of that childhood friendship was hearing from mutual friends that she had been going around laughing and bragging about “putting me in the hospital”, proud of the part she played in my breakdown. We will never again allow anyone like that into our lives. Whatever it takes to never find ourselves in that situation again.
Some people say that suicide is selfish because all it does is pass the pain onto others. Other people attempt to explain that those who make attempts just don’t want to hurt anymore themselves. Many nowadays recognize that suicide is often a tragic byproduct of mental illness. I have been suicidal. I have been in those moments of desperately wanting the pain to stop. I have had suicidal attempts in my past and now an unintentional attempt because I was upset, irrational and not thinking clearly. I have lost loved ones to suicide, and known others who have lost people they loved deeply, as well, so I understand all too well how devastating it can be from the outside looking in. Regardless of where you fit in the equation, suicide is always heart-wrenching and tragic.
One thing I can tell you, whether you are suicidal or not, whether your attempt is intentional or not, the result is always the same. Pain. Pain for everyone you love, everyone who loves you. Pain for yourself should you survive. And not just physical pain from tubes and tests and IVs. Emotional pain as you see that haunted look in their eyes, that kernel of doubt that appears every time afterwards that you insist you’re okay. Pain that will continue for years, that will likely never go away, whether you’re around to see it or not.
Pain and overwhelming loss for everyone who has ever cared for you. They will never be the same. You might carry physical scars from your attempt, but theirs will run much deeper and never fully heal. Those close to you will retrace all your interactions, looking for signs, real or imaginary, to explain what happened. They will question whether they should have said this or should not have said that. People who you have not seen in ages will question if they should have reached out, as if they could have magically known things were bad and somehow made a difference. They will all blame themselves for your actions and choices. Whether you die or not, they will be forever haunted by that one choice you made, something completely beyond their control. Yet, in their pain, they will embrace that blame, caught in a cycle of imagining every scenario that could have prevented it.
To those contemplating suicide or just on that edge of not being able to cope with life anymore, please know that I understand completely how hard it can feel, especially when you’re struggling with mental illness. You are not alone. But I wouldn’t wish the kind of pain I caused on anyone, not my worst enemy, not my loved ones or yours. Once it has happened, though, you cannot ever take it back. Even if they don’t lose you, your relationships will never be the same. I cannot change the pain I’ve caused, but perhaps, by sharing my story, you can spare your loved ones from the same fate.
Please be careful. Be careful with yourself and be careful with your loved ones. Life is a fragile thing, a light that can be snuffed out in a moment. It may be hard sometimes, downright unfair. But life is also precious. As is love. Don’t take either for granted.
I know all too well that mental illnesses are rarely rational. When we are upset, we often react based on pure emotion. So take precautions now, during the calm before the next storm. Do not leave ways to harm yourself readily accessible when you might find yourself too emotional to think rationally. Don’t set yourself up to fail or to hurt yourself or those you love.
I thankfully am very lucky to still be sitting here, able to share my story. Many others have tragically lost their battles with mental illness without ever having a chance to tell their tale. Their stories are told in yearly mental health statistics and on memorial pages created by those they left behind. We’re all in this boat together and we only have two choices. We can either become a statistic or we can keep going, keep fighting, and find some way to make a difference in this world, even if only to show others that it is possible to survive our diagnosis. There are too many mental health statistics and enough pain already in this world. If we have to choose anything, let’s choose life and love.
Much love, compassion, hope and faith that even if this does not find you well, it finds you strong enough to keep living. ❤
Other than my ongoing battle with mental illness, I have been relatively healthy my entire life. I don’t drink, smoke or do drugs. Prior to the last couple years, other than mental health doctors, I rarely went to the doctors at all beyond basic check ups. Other than medications for my mental illness, I have rarely relied on any medication stronger than acetaminophen or an antacid, and only then if absolutely necessary. Due to this fact, I had little experience with battling my insurance company for most of my life. These last two years, however, have been a real eye opener.
I have struggled with severe depression and anxiety my entire life. For years, I was labelled “treatment resistant” because no medication I took ever seemed to work. A couple years ago, my meds doctor at my mental health clinic sent me for a genetic test to help determine what prescriptions might work better for me based on my genetic make up.
The test came back with an unexpected result. I had a genetic mutation that rendered my liver incapable of metabolizing folic acid in any usable amount. Broken down folic acid, called l-methylfolate, is used by the neurotransmitters in the brain to help moderate moods. Because my own body could not metabolize folic acid into l-methylfolate in any usable amount, the neurotransmitters in my brain had been literally starving for what they needed for the majority of my life.
It was a fairly easy fix. There’s a pill on the market of broken down folic acid. It is, on average, under $200 a month.
It is something my body cannot make on its own and my brain needed to function properly. Yet my insurance company fought me on it for almost 9 months. In the meantime, my doctor had to prescribe me a collection of high dose antidepressants, anti-anxiety and sleep aids in hopes that together they might even slightly touch my mental illness. I had a revolving combination of medications, anywhere from four to six prescribed at a time, with the dosages being steadily increased.
The cash price of the one anti-depressant alone that I took during that time runs on average $250-$300 per month. The one anti-anxiety medication I took runs between $45-$85 per month. The one sleep aid ran around $20 a month. Other medications we tried ran between $10-20 apiece. Altogether, I was taking between $450-$500 a month worth of medications that were barely able to do anything for me because my insurance company did not want to pay less than $200 a month for the medication I truly needed.
After almost 9 months of fighting and multiple appeals and fair hearings, I finally got my prescription approved. These days, I am taking my l-methylfolate, along with one moderate but inexpensive antidepressant and a natural sleep aid. Altogether, the cost is still under $200 a month. I honestly cannot fathom why the insurance company would have opted for 9 months to pay over double that amount on a less effective treatment instead of just approving what my doctor had initially prescribed me, what I truly needed.
I wish I could say that this was an isolated incident but over the past couple years, I have had multiple run ins with my insurance company in regards to my treatment. Though relatively healthy for the majority of my life, these last two years have been plagued with multiple health issues, issues my insurance company has chosen to fight me on, as well.
Two years ago, I was rushed to the emergency room in severe pain. It turned out that a large cyst had grown on my ovary. Within the cyst, a mass of tissue had begun to grow, as well. Together, they had put increasing pressure and weight on my ovary, contorting it and damaging not only the ovary itself but also on the veins around it. The ovary was damaged beyond repair. There was a concern that the mass within the cyst might be cancerous. Rather than doing a biopsy then surgery that would prolong my suffering, my doctor opted to remove the ovary first then biopsy the mass on it afterwards.
Again, it was an easy fix. The ovary had to come out.
Yet the insurance company dragged their feet for over two months. For over two months, I was in constant agony, on bedrest, slowly awaiting the pre-op tests to get approved, let alone the surgery itself. For over two months, I had to take pain medication and see my doctor almost weekly to check my blood pressure, monitor my pain levels and make sure no infection had set in. For over two months, I had to have a coordinated care provider come to my house to assist with things I could no longer do for myself because I could barely move on my own without excruciating pain.
The ovary, along with the cyst and the mass of tissue within it, had to be removed. The insurance company ended up having to cover numerous extra doctor appointments more than was necessary, along with added prescriptions and periodic home health care assistance, all because they delayed the approval of treatment that was ultimately going to be needed to begin with. Dragging their feet and delaying approval did not save them any money. Quite the opposite.
Most recently, during a ct scan it was discovered that I have two meningioma tumors on my brain. Though 80% of meningiomas are benign, doctors still have to test them to make sure they are not. I first saw a neurologist who, in turn, referred me to a neurosurgeon for testing. The neurosurgeon ordered both an EEG and an MRI with and without contrast to be done so they can get a better look at my tumors.
It has been almost two months since the meningiomas were discovered. The EEG was completed, yet we’re still waiting for insurance approval for the MRI. Meanwhile, my neurologist keeps scheduling appointments because, until he knows for sure that they are benign, he has to keep monitoring me for signs of seizures or other averse effects.
Best case scenario – if they are small enough and benign, it is considered watch and wait, with them being periodically monitored and measured once or twice a year to look for changes. Worst case scenario – they are malignant, I need surgery and radiation. But until the MRI is done, it is a case of *Schrödinger’s tumor – we won’t know whether it is benign or malignant until the doctors get in there for a better look.
Meanwhile, I keep going in for more or less useless appointments where my doctor keeps checking in to ask how I am feeling and checks my vitals, then we sit around discussing how the insurance company still hasn’t approved the MRI. Yet, he can’t put off these appointments until he knows for sure whether we need to worry about these tumors or not. So the insurance company is getting billed for appointment after appointment to check in on how I am doing while we wait for the MRI instead of just approving the MRI that will ultimately be needed anyway. These tumors are not going to go away on their own. The MRI is needed to fully diagnose them and my neurologist is not going to allow me to fall between the cracks just in case they are malignant and surgery is needed.
I honestly do not understand why insurance companies fight patients and their doctors on treatment that is needed. It is not like any of my treatment was something ordered on a whim. There was a prescription for a substance my brain needed that my body could not make on it’s own. There was a surgery to remove an organ that was irreparably damaged and causing me severe pain. And there was a test needed to determine whether the tumors on my brain are benign or malignant. Three cut and dry cases of treatment that was very much needed and not in the least extravagant or superfluous.
Yet, the insurance company’s decisions in each of these three cases over the last year has cost them, each time, much more than it would have cost them if they had approved the treatment the doctors in each case recommended. If a prescription, a test or a procedure is ultimately needed and there is no other possible recourse to resolve the issue, why would the insurance company either deny it outright or drag their feet in approving it? It will only end up costing them more in the long run.
I with I could say my experiences were isolated incidents. In the course of my battles over the past two years, I have spoken to numerous others who have been and are currently fighting their insurance companies, as well, for the treatment they need. It appears to be more commonplace than most people realize.
When did it change that healthcare became more about trying to cut corners and save money than in treating the patient and doing what was best for their health? Has it always been this way? Wealth over health. Profit over people. It’s honestly disgusting, despicable and deplorable. Having been relatively healthy for the majority of my life, I never realized what a struggle it can be to get the treatment you need covered.
While I understand and acknowledge that fraud is rampant in medicine today and insurance companies need to validate claims before approval is given, once there is proof to support the medical treatment requested, it makes little sense to drag out or deny the claim further. Insurance companies could ultimately save substantially more money not by fighting patients on the treatment they require but by approving and expediting it so that their overall treatment and recovery takes less time and costs less money.
* Schrödinger was an Austrian scientist in the early to mid 1900’s. He developed a theory made popular in recent popular nerd culture, called the Schrödinger’s cat paradox in which a cat is sealed in a box with a flask of poison and a radioactive source. According to his theory, it is accurate to assume that the cat is simultaneously both alive and dead because either option is probable. Until you open the box and check, you do not know for sure. I referred to my meningiomas as Schrödinger’s tumors because, until the MRI is done, there is no way to know for sure whether they are benign or malignant.
This last week has been yet another stark reminder of how differently people view and react to mental illnesses versus physical ones, especially in medical settings like the emergency room.
Please bear in mind that I am by no means a frequent flyer in the emergency room. The last time I was in the E.R. was about two years ago when I had a large cyst and tissue growth on my left ovary that had twisted and contorted it, causing severe pain. I was in no way crying wolf or looking for attention. My E.R. visit resulted in a surgical referral and the removal of that ovary.
My mother was a hypochondriac. She had doctors for everything and scheduled appointments with specialists on the drop of a dime. Somewhere along the way in my journey to not become her, I became the polar opposite in that aspect. I avoided doctors and only sought medical treatment as a last resort. I once tried to walk off appendicitis for a few hours as bad stomach cramps. On some level, I know it is irrational and that I need to make my health a bigger priority, but I still struggle to go to the doctor unless it is absolutely necessary.
Last week, I had a bit of a scare. I had gotten upset after a spat with my partner and had gone for a walk to calm down and clear my head. Somewhere along the way, though, my head began to hurt and spin. I knew I was upset but the details felt distant and fuzzy, as if the facts were lost in my head somewhere yet I was unable to access them. The harder I tried to root out facts, the more my head spun and the more confused I felt.
While I do struggle often with losing numbers, words or specific facts as a result of my mental illness and have also had memory issues following anxiety attacks and PTSD flashbacks as well, I have never experienced anything like this before. When I realized I could not even recall my own name, it sent me into a panic. I knew something was seriously wrong so went into the first business I saw and asked the clerk to call 911 for help.
An ambulance arrived to take me to the hospital. Their initial fear was a stroke. They started running multiple tests and sent me for a CT scan. As tests began to come back ruling out the prognosis of a stroke, the demeanor of the staff treating me began to change drastically.
Their next possible prognosis was that it was purely a mental issue or that I was lying about the severity of my condition, putting on some sort of act for attention. Despite the fact that I was visibly agitated and distressed at being unable to recall even basic facts, their demeanor changed. All of a sudden, they became outright accusatory and began to question whether I was telling the truth. One nurse went so far as to tell me point blank that they would have to start doing uncomfortable and painful tests, including taking my temperature rectally, putting in a catheter for a clean urine sample (though I had given them one in a cup not twenty minutes prior) or even putting a needle in my back to withdraw fluids for tests “unless I had something I wanted to confess”.
As I laid there in a state of panic not because of the possible upcoming uncomfortable tests but rather because my brain just was not working like it should, I could hear that nurse at the desk nearby laughing with her coworkers about how she was “going to get a rectal thermometer and make me talk”, the results of my CT scan came back.
It turns out that I have two meningioma on my brain, tumors between the surface of my brain and the inside of my skull. The larger of the two is in the falx region, in the front of my head, which deals with memory. The smaller of the two is in the middle, presiding predominantly over balance.
Neither was particularly large thankfully, but when housed in the small space between my brain and skull, even smaller tumors could cause issues. Apparently in my already agitated state following the spat with my partner earlier, there must have been just enough pressure put on the memory portion of my brain to cause a temporary memory loss.
The whole demeanor of the staff treating me shifted once again, becoming very serious and somber. They gave me some sedatives and anti-anxiety medication to calm me and slowly the fog began to clear. They began bringing in paperwork and test results for me to bring to my primary doctor to get a referral for a neurologist, stressing the urgency of the situation. Though they informed me that something like eighty percent of meningiomas are benign, even benign tumors continue to grow and could cause temporary or even lasting damage to my brain if left untreated. Ultimately, I’ll need surgery regardless of whether biopsy results conclude the tumors are benign or malignant.
The whole situation made me nauseous, even beyond the fact that I have tumors on my brain. Just the fact that I was only taken seriously when they feared for a physical condition like a stroke or when the tumors were found on my brain was appalling. As I had mentioned earlier, I have had memory issues related to my mental illness in the past, though thankfully never quite to this extent before. However, following PTSD flashbacks or severe anxiety attacks, my brain is always fuzzy and muddled, as well, and I often have periods of impaired memory afterwards. The fact that professionally trained medical staff at an emergency room would treat any condition they believed had a mental origin less seriously, let alone as a joke, is beyond disgusting to me.
I did not make a scene or call them out on their obviously shifting behavior, in part because the very idea that I had tumors growing on my brain left me in a state of shock. Even more so, like many others struggling with mental illness, I have sadly become accustomed to my mental health not being taken seriously. However, it is deeply disconcerting to me that emergency personnel at a hospital would be so openly cavalier about anyone’s mental health, treating their patients as a joke.
I walked away from this situation with a few distinct feelings and thoughts in my head. First and foremost, I have a newfound anxiety and wariness about going anywhere alone until this is resolved, particularly when upset. I was lucky that I was in an area with easy access to other people and was blessed to have maintained enough reason to know to ask for help. But I carry with me now an ever-present fear that next time I might not be as lucky, especially considering that I regularly operate under conditions of extreme anxiety and depression due to my mental illness.
I also am distinctly aware of all the unknowns in my foreseeable future. I am not sure exactly where I go from here. I understand the basics. Get a neurology referral, get an MRI, get a biopsy, have surgery, possibly radiation if needed. But I have no idea of the time frames of anything just yet and probably won’t until tests and biopsies start coming back. I don’t deal well with the unknown. Not being able to plan to any degree heightens my anxiety to dangerous levels.
There is a strange sense of underlying optimism, as well. Somehow I know I will get through this, that I’m a tough cookie. I come from strong stock. Both my parents survived multiple types of cancer and other ailments before they passed. My time is not up yet. I have too much left to do. I have a lot of fight left in me.
However, I am very aware of the fear growing inside me, too. Cancer scares me to the core. I remember going to the hospital day after day when my mother had part of her lung removed due to lung cancer, watching her fade in and out in the CCU, not sure whether she would make it or not. I remember reconnecting with my father just in time to watch cancer wreak havoc on his body, going through repeated cycles of surgeries and chemotherapy. His cancer always seemed to be one step ahead, reappearing again and again in different areas until it eventually killed him. I’ve seen cancer eat away at and kill multiple friends over the years, as well. Cancer is, by far, my biggest fear and it is now on my doorstep.
More than anything, though, I came away from this with a harsh reminder of the stigma that still surrounds mental illness, even in medical facilities. When they believed my issue was a mental one, I was a joke they saw fit to threaten with unneeded, uncomfortable and painful tests as a way to get me to “come around”, expecting my condition to magically cure itself and disappear under threats of unpleasantness. It took finding tumors on my brain, something they could physically see, for my condition to finally be taken seriously.
Republished on The Mighty on 6/17/18.
Republished on Yahoo Lifestyle on 6/17/18.
Republished on Yahoo Finance on 6/17/18.
Republished on Yahoo Sports on 6/17/18.