If it were Cancer…

October 21, 2017August 18, 2022 / cheriemonarch / 13 Comments

To all patients, parents, families, friends, providers, clinicians, teachers, coaches, school personnel, and frankly, everyone, everywhere who has or knows someone with an eating disorder…

Cancer.

It is one word.

One single word.

A powerful word.

When spoken, it’s a word that immediately elicits compassion, empathy, support, understanding, and action. It is one word that immediately garners the support of family, friends, a team of physicians, and will compel people to start walks, fundraisers, galas, go fund me’s, meal support, etc. Cancer will mandate that there be an army of warriors surrounding the family and patient as they walk this journey. And it should.

Cancer. A longtime friend recently posted this on his home page. His daughter is battling cancer. Of course, it immediately elicited my empathy and understanding. Offers of how can I help?

My friend is aware that our family had a loved one that struggled with an eating disorder. He understood that as a parent that this was the worst possible thing that could have ever happened to me. That I would have gladly taken the place of my daughter. That I would have given anything to bear her pain and suffering. He understood that my journey of a child with a life-threatening illness was worse than my own two open-heart surgeries.

I messaged him and offered support. I shared how very sorry I was for what his daughter and his family were enduring. That I can’t imagine how difficult CANCER has been for them.

I was blown away. What I was not prepared for was his reply…

“Actually you don’t have to imagine watching your child go through something like this. You lived it. Different disease but just just as deadly, and probably more difficult to treat. The leukemia my daughter has has a very well developed treatment protocol, that is used throughout the entire country, and there is constant collaboration between all of the treatment centers. I know that is not the same with eating disorders. Hell, you still have to fight to get it recognized as a disease, and not just some “silly little girl who won’t eat.” To me your battle seems harder.”

My conversation with my friend caused me to do a lot of reflection. Having a loved one battling an eating disorder is much like battling cancer. It is one of the most challenging and most difficult journeys of our life. Some of us may be battling to get a diagnosis; others of us may have been given a diagnosis but are trying to understand what’s happening.

The difference with eating disorders is …No one is provided with a handbook on how to heal your loved one from an eating disorder. Follow this protocol. Instead we’re left with minimal guidance, minimal support, lots of questions, no direction, a lot of confusion, and no respite care. There are conflicting messages everywhere.

You, or your loved one, are a shell of their former self, and barely recognizable. As a parent, you’re doing everything you can to provide care, support, and try to understand what the hell is going on. You just know that a terrorist is holding your loved one captive. In fact, he’s holding your entire family captive.

When our loved one has an eating disorder, it’s like the whole family has an eating disorder.

What is the answer? How can we help ourselves or our loved one navigate this journey with an eating disorder? How can we help others understand this journey?

When I was walking this journey with my loved one, it really helped me to reframe every step of the process in terms of cancer. If it were cancer…

The thing that is important to quickly understand is that food and stopping behaviors is their chemo. Without chemo they will die. Without food, they will die.

Every decision, every action, every statement needs to be addressed in terms of cancer.

If it were cancer…

If it were cancer… Would it immediately evoke empathy, compassion, support, and action?

If it were cancer… Would you think you or your loved one chose it? Would you think they could just stop?

If it were cancer… Would you allow your loved one to refuse the medicine or the treatment?

If it were cancer… Would you think that it was a phase? Would you think that it would just go away?

If it were cancer… Would you think they had a choice? Would you tell them just to eat?

If it were cancer… Would you negotiate whether or not they need chemo? Life-sustaining medicine. Food.

If it were cancer… Would you ever ask what ingredients are in the chemo (food)? Want to be certain your loved one was aware of the ingredients in the chemo (food)? … So why not just serve the chemo (food) with the ingredients they need to heal their brain and body?

If it were cancer… Would you run cancer around life? Or life around cancer?

If it were cancer… Would you hesitate to quickly assemble a multidisciplinary team? Would you hesitate to find the best practitioners in the country? In the world?

If it were cancer… Would you be concerned about geography? Would you care if the treatment were in your state… or would you travel across the country without question?

If it were cancer… Would you even think about school? Would you be concerned about graduations, or college applications, and whether they graduate with their twin?

If it were cancer… Would you search out the best possible program? Or just go with one that’s closest?

If it were cancer… Would you allow a provider to wait a month, two or three until the next appointment? What you wait until next week to call for an appointment?

If it were cancer… Would you schedule treatment around holidays, vacations, school, or summer camps?

If it were cancer… Would you postpone treatment a few weeks? Would you think it won’t make a difference. Or would you start today?

If it were cancer… Would you continue competitive sports, dance, and exercise? Or would you rationalize that their body needs rest, needs to heal, and restore strength and energy to fight this demon?

If it were cancer… Would you accept partially healed? Or would you push for full recovery/remission?

If it were cancer…Would you leave a piece of the cancer tumor, or would you continue to pursue aggressive intervention and treatment until the tumor was eradicated and the margins clear? (Full healing of physical and mental state… no weight suppression, no goal of minimal weight restoration, minimal intake, and doing the bare minimum in hopes of recovery)

If it were cancer… Would you hesitate to share with family, friends, or your entire community?

If it were cancer… Would it matter if they were 12, 18, or 30? Would the fact they were over 18 keep you from insisting they complete treatment or take their medication? Would the fact they were 18 even enter your mind? Would you even consider their adult status when mandating them to complete chemo and radiation?

If it were cancer… Would you let them leave the treatment program before the chemo was complete? If 10 chemo treatments were prescribed, would you let them stop after five?

If it were cancer… Would you postpone or delay treatment because they’re looking a little better? Would you think maybe this is a phase? Maybe they don’t need treatment? Would you even care about the way the looked?

If it were cancer… Would you let them forgo the chemo because it caused them distress and made them sick?

If it were cancer… Would they leave treatment and go right back to school and life? Or would they automatically be allowed time for recovery?

If it were cancer… Would you negotiate treatment at all? Or would you lovingly and definitively state treatment will save your life… It’s not an option.

If it were cancer… Would you let them go to college? Would you let them finish the semester and rationalize it’s only three more weeks? Chemo can wait.

If it were cancer… Would you postpone an intervention?

If it were cancer… and your loved one called right after they started treatment and said I hate it and I want to come home, would you let them? Would you pick them up and allow them to leave AMA?

If it were cancer… Would you care what friends, family, or neighbors said or would you just be focused on getting your loved one well?

If it were cancer… Would you accommodate it or do everything possible to eradicate it?

If it were cancer… Would you be passive or would you be aggressive?

If it were cancer… Would you allow them to drive a car when they were so sick from undergoing chemo treatments?

If it were cancer… Would you validate their distress, yet still require them to undergo prescribed treatment? Or would you let the treatment stop?

If it were cancer… Would you be angry at your loved one? Would you lose your temper?

If it were cancer… Would anyone in the family be upset or angry? Would there be any hesitation to support the family or the patient?

If it were cancer… Would you remember that you have to take care of yourself, so that you can take care of your loved one?

If it were cancer… Would you ever blame yourself? Would you ever think that you caused the cancer?

If it were cancer… Would you be proactive and diligent about following up with your team and providers? Or would it not even be on your priority list?

If it were cancer… Would you and your spouse or ex be working together to eradicate the cancer in your loved one? Or would you be feuding on how to navigate?

If it were cancer… Would you go against the treatment team’s recommendations? Or would you think it’s not that serious, we will wait to seek a higher level of care?

If it were cancer… Would you accept the first medical practitioner recommended? Or would you ask questions and seek out the best?

If it were cancer… Would you ask me or my loved one how did you get cancer?

If it were cancer… Would you validate the struggle? Or would you judge and interrogate?

If it were cancer… Would you be empathetic? Or would you say “just eat” or “quit purging” ?

If it were cancer… And a clinician did not appear educated, would you stay? Or would you seek new expert care?

If it were cancer… Would you have done anything different? Would you have taken a different path?

If it were cancer… Would you accept any treatment to stay alive? Or would it be a battle just to get you in treatment?

If it were cancer… Would you understand why your family is so scared?

If it were cancer… Would you tell your family?

If it were cancer… Would you understand why your family wants to support you? Why they want to be involved?

If it were cancer… Would you tell them it’s none of their business? Would you tell them to walk away? Would you tell them that you can do this on your own?

If it were cancer… Would you refuse treatment? Would you battle your family? Or would you listen?

If it were cancer… Would you understand why your family wants you to be diligent in your recovery? Wants you to have the support of a team?

If it were cancer… Would you think your family is trying to control you? Would you think that your family is trying to smother you? Or would you think my family really loves me?

If it were cancer… Would you allow your family to hold your hand as you navigate treatment?

If it were cancer… Would you allow them to comfort you when you’re struggling?

If it were cancer…Would you allow family and friends to love you? To hug you? Or would you isolate?

If it were cancer… Would you trust them and want them to help carry your pain?

If it were cancer… Would you run to them or from them?

If it were cancer… Would you listen to their concerns and their fears?

If it were cancer… Would you understand that this is the most terrifying thing that has ever happened to your family? Would you understand that their fears are justified?

If it were cancer… And your student needed to miss school would you hesitate to allow them? Or would you do everything to support them until the school can wait?

If it were cancer… Would you allow virtual school at home until they were recovered and fully in remission?

If it were cancer… Would you penalize them for missing school?

If it were cancer… Would you do everything to support the patient help them reintegrate into school? Or would you saddle them with unrealistic expectations and burdens?

If it were cancer… Would you send cards and bring meals? Would you offer to help?

If it were cancer… Would you offer to watch the kids so the carers could get a night away?

If it were cancer… Would you unite the neighbors, school families, and church members to support the family and the patient? Or would you look the other way? Would you do nothing?

If it were cancer… Would you continue to speak to those affected about your diets, workouts, latest health craze?

If it were cancer… Would you quit asking the patient to babysit because you were afraid your children might catch “it”?

If it were cancer… Would you reach out to the family if you had not heard from them for a week, a month, a year? Would you express concern and offer support?

If it were cancer…Would we be demanding more research? More funding? More grants and scholarships? Would we accept “no”?

If it were cancer…Would nations, organizations, and populations join hands to eradicate?

If it were cancer… Would you hesitate to give your employee time off? Or would you offer them to take all the time their family needs?

If it were cancer… Would you hesitate or refuse to cover treatment? Would you tell the patient or the family that treatment is not “medically necessary” and deny insurance coverage?

If it were cancer… Would you tell the patient and the family that they need to fail at a lower level of care first before insurance will cover prescribed treatment?

If it were cancer…Would you ignore the prescribed treatment of the treatment team and allow the insurance company to determine what is best practice or best care for the patient? Would you follow the mandates by the insurance company medical director who has never met the patient? Would the public and media allow any such treatment of a cancer patient?

If it were cancer…Would a patient be discharged from care without completing treatment?

If it were cancer…Would continued coverage be reviewed every two weeks, week, or three days? Would chemo treatments stop if insurance denied?

If it were cancer…Would the patient or family be battling insurance while trying to save their loved ones life?

If it were cancer…Would treatment be denied by the insurance company?

If it were cancer…Would the entire team – family, friends, providers, and insurance demand early intervention and treatment? Would every one collaborate and communicate to ensure the action was swift and aggressive? And as prescribed?

If it were cancer… Would you let any newly diagnosed patient leave your office without appointments, materials, and support?

If it were cancer… Would you help the patient and the family find appropriate support and treatment? Would you do everything possible?

If it were cancer…and you weren’t familiar with that particular type of cancer, would you align yourself with a doctor who was? Would you tell the family I am going to help you find the best care possible?

If it were cancer… Would you tell the family that their loved one needs to do this alone?

If it were cancer… Would you ever tell the family that their support is not helping? Or would you teach them how to support the patient?

If it were cancer… Would you ever tell the patient they were “not that sick”?

If it were cancer… Would you do everything possible to support the patient and the family?

If it were cancer… Would you hesitate to collaborate with other treatment providers? Or would you feel it’s a necessity?

If it were cancer… Would you listen to the family’s concerns when they approached you?

If it were cancer… Would you schedule appointments in two days, two weeks, or two months?

If it were cancer… Would you hesitate to include the parents? Would you care if they were over 18? Would you let them decompensate because there was no release? Would let them refuse to take the chemo? Undergo treatment?

If it were cancer… Would you think it is serious?

The bottom line is eating disorders are just as deadly as cancer. In fact, without treatment, up to 20% will die. They have the highest mortality rate of any mental illness and they are the third most chronic illness in adolescents. Every 62 minutes someone dies as a direct result of an eating disorder… 23 lives lost every single day!

So as you’re navigating this journey yourself, with a loved one, with a patient, or with a friend, and you’re pondering what to do or what to say, how to support someone who is struggling, determining your next step, questioning what the right path is, please try to reframe it.

If it were cancer…

P.S. This post is not meant in any way to diminish the seriousness of cancer nor negate any families horrific journey with cancer. It is intended to highlight the seriousness of eating disorders. Imagine if everyone treated eating disorders like cancer…

Written by Cherie Monarch, a mom who has lived this journey. To contact author Email: cheriemo@tampabay.rr.com

If you are caring for a loved one with an eating disorder, please join Mom2Mom – Eating Disorders Family Support Network or Man2Man – Eating Disorders Family Support Network on Facebook. No one should walk this journey alone.

If you have been affected by an eating disorder or disordered eating and would like further information or help, please Contact National Alliance for Eating Disorders for support at (866) 662.1235 toll free or info@allianceforeatingdisorders.com.

I Understand What it is Like to Not be Heard

November 25, 2016August 18, 2022 / cheriemonarch / 11 Comments

Today is the one year anniversary of my second open heart surgery. A surgery I vowed vehemently that I would never do again. A surgery that is so painful it can’t even be put into words. I have spent most of my life fighting and advocating for others… my daughters, my family, my friends, and my clients. It recently occurred to me that maybe I should start spending some time advocating for myself, speaking my truth, and raising my voice. That maybe it would help others navigate this journey we call life. So, I have decided to commemorate this anniversary by starting my own blog and speaking passionately about those things that make my heart beat, or keep it from beating.

Most people don’t understand what it’s like to live with an illness or medical condition and to be dying, literally, yet nobody’s listening. Not your family, your friends, or your doctors. Often times we may have cancer, heart issues, mental illness and fighting a battle every single day, struggling just to make it through the day. Yet no one is listening. You are routinely told “you look great”, “you are fine”, “we find no evidence that there’s anything clinically wrong with you”, etc.

Your struggle is invalidated EVERY SINGLE DAY!

I have lived this for the last six years. It started in the beginning of 2010. Suddenly I started experiencing physical exhaustion. I routinely road my bike for 10-15 miles every day, but was finding great difficulty riding two miles per day. I would easily become winded. I could not go one moment more. I went to my primary care physician and my endocrinologist. Both of them assured me “you look great, push through it, you are getting older. It’s Important that you exercise”.

I continued to persevere even though every fiber in my body was telling me something was drastically wrong.

This went on for six or seven months until I ended up in the ER in severe cardiac distress. Of course my EKG was normal, but my blood pressure was abnormally high. Luckily the ER attending DID listen to me and did a CT scan of my chest. There he found a large aneurysm on my ascending aorta. I was discharged from the hospital without ever being admitted as he saw no immediate reason for concern. I attempted for weeks to get my primary care physician to listen. I was routinely dismissed and told that it was nothing of concern, don’t be worried, just continue to live your life.

The frustration of knowing something is critically wrong, yet being met with deaf ears is infuriating and isolating. It is as if you are standing alone on a small island in the middle of the Pacific.

I took matters into my own hands and advocated for myself. I found a cardiologist that was willing to do an echocardiogram on me. It was discovered that I had a birth defect in my heart. One that has existed for 45 years yet went undetected. A heart catheterization was performed and it was found that my heart was in severe failure. Within several weeks, and two days after my 46th birthday, I was laying on an operating table having a 13 hour open heart surgery. I was put in hypothermia. Portions of my aorta and my heart were replaced.

All of this for someone who three weeks prior they could find no medical reason for my daily struggles – a condition that has existed for 46 years!

I survived that heart surgery, but had a complication that has haunted me relentlessly ever since…24 hours a day, 7 days a week, 52 weeks a year, for over 5 years!. Every heartbeat resonates throughout my body. It starts from my stomach, sends a thrill up my chest, pounds against my sternum, and vibrates up my esophagus to the top of my head. This happens 60 to 80 times per minute. To say that this is a challenge to live with would be an understatement. It’s difficult to sleep at night; it’s difficult to focus during the day. It’s a challenge some days to make it through the day. If I am upset or get excited the vibration becomes even more pronounced and more frequent. So you spend your days trying to remain as calm as possible. You try to distract yourself.

You are repeatedly told by medical practitioners that it’s no big deal. You try to convince yourself that you can live like this. For five years I persevered through this daily torment.

In July 2015, I again get the sensation that something is terribly wrong. I start having difficulties walking to the point that I can’t walk across my house without pain. I repeatedly seek the counsel and wisdom of my doctors. A few miscellaneous tests are conducted, and again I am dismissed and told that there is nothing medically wrong. I am instructed to “push through” the pain in my legs and to “dismiss” the feeling of uneasiness and mortality being in my near future.

Seven times I return to the physicians begging them to listen to me, begging them to be more proactive. Again, I am dismissed and told that “there is little to no likelihood of anything being clinically wrong with me”.

I make one final attempt. I visit my physician and beg for her assistance. I plead that I’m dying and I need her help to figure out what is wrong. Clearly, she just thought that I was some crazed 51-year-old woman or a hypochondriac that is becoming a pain in her backside. The next day I have an “event”. I lose vision in left eye for several minutes and I have difficulty speaking. I can think my thoughts, but I can’t speak them. I go to the ER and they discover I’ve suffered a TIA or mini-stroke. I’m told that I can try to address it on an outpatient basis or if I want, I can be admitted to the hospital. I explain to the ER physician that something is terribly wrong and that I’ve been begging my medical support team to listen for five months. He agrees to admit me and run several tests. From there the shit storm begins… every single day reveals a new piece of the puzzle. It starts with my carotid being 100% occluded…that’s right…my carotid is 100% blocked for 6 inches. From there it is discovered that both of my legs are loaded with emboli. My husband and my advocates continue to push for answers. They were relentless. It was their tenacity that saved my life. After much prodding, additional tests were completed that revealed that I had a large thrombus sitting on my heart. I am kept in neuro ICU as they attempt to dilute the clot with intense IV medication. I am woken every hour for days, weeks, as they attempt to determine if I’ve suffered another event. I am on death watch.

It is difficult to explain what it’s like being on death watch. The hours tick slowly by. Waiting for something to happen. Praying that something will not happen. You start to analyze your-life. The choices you’ve made, the experiences you’ve encountered. The thoughts become overwhelming. Facing your own death is extremely difficult. At some point you have to detach. It’s almost like you’re having an out of body experience. The feeling of eminent doom is overwhelming. Doctors are skeptical when they look at you; after all, I looked totally “healthy”. But then they would read my chart and a sense of gloom would cover the room like a blanket.

One doctor told me “you’re the best looking patient on the floor, yet you are the sickest -no one would know you’re sick by looking at you”.

Being wheeled into my second open heart surgery.

I cannot put into words the feeling of frustration and hopelessness when you know something is drastically wrong but you’re being routinely dismissed by medical professionals and others just because “you don’t look sick”. In the months that preceded my trip to the ER I told my husband and several of my close friends that I was dying. I was not overdramatic; it was just a statement of my truth. I could feel my body shutting down. Yet no one would listen. No one seemed to care. And the fact was, I was right. Slowly pieces of my body were succumbing to the plague that riddled them.

Things became very critical and it was necessary for me to undergo open heart surgery for the second time. This was my only hope, my only chance I had for survival. I wanted to survive. Once again, one year ago today, I would undergo my second open heart surgery. My chest would be split open and my heart exposed for all to see. My prize for being ignored was I got to spend my Thanksgiving in the cardiac ICU fighting for my life. There was no turkey, stuffing, sweet potatoes or pumpkin pie on my Thanksgiving Day. Instead, I was intubated with chest tubes, arterial lines, catheters, and pacing wires invading my chest, arms, and neck.

As I slowly gained consciousness, I recognized the pain in front of me. I had met it before. There is not enough dilaudid to make meeting that pain any easier. The pain is like an avalanche roaring toward you. You can’t run from it when you see it coming. It overtakes you and buries you, smothering you and sucking the oxygen out of you. It was hard to wrap my head around the fact that I was being forced to endure this life altering event again. The pervasive thought was that this did not have to happen. My heart would be physically repaired, but the mental and physical pain, anguish, and devastation would linger.

The frustration of screaming, and no one listening, would remain. The loneliness of being stranded on the island would leave scars.

Today, in my reflecting, it crossed my mind that my experience is not much different than those that struggle with mental illness, especially those that have an eating disorder or anxiety. An eating disorder is a mental illness with physical manifestations. My constant “vibration” which plagues me 24 hours a day, is not unlike the invasive thoughts that plague those struggling with an eating disorder or hound those that suffer anxiety… 24 hours a day, seven days a week. Relentless. Daunting. Paralyzing. The fact is…

You cannot always determine whether someone is struggling with mental or physical illness by looking at them.

Patients and families with sick children repeatedly seek the counsel and wisdom of medical professionals in the hopes of saving their life, but are routinely told “they look fine”, they don’t look sick, their labs are fine, all tests are normal, this is just a phase, let’s just observe over the next few months, etc. The daily struggle and frustration of trying to get someone to help, someone to listen, when you know your body or your child’s body is shutting down is difficult to put into words. You just want to scream and yell “I am dying! Why won’t anyone listen to me?”. This is much like the situation that Candy Miller in Texas encountered when trying to secure medical assistance with her daughter, Lacey Smarr. She took Lacey repeatedly to medical professionals and hospitals searching for answers, for guidance, for life-saving treatment. She even suggested her daughter may have an eating disorder. No one truly listened. After all, she looked fine. The next day, the day after her 15th birthday, her daughter suffered a cardiac event that would take her life. An event that could have possibly been prevented had someone taken the time and the energy to truly listen.

When we listen and take a thorough medical history we can hear the answers that we cannot see.

Please be clear, I am not blaming medical professionals for not “seeing” the illness in front of them. I am not blaming them for not being educated about eating disorders or mental illness because in all reality they may not even know they need to be educated, What I am blaming them for is not listening to the families and patients that come to them seeking their wisdom and their guidance, that are looking for intervention and support. I am blaming them for not truly taking the time to listen and understand the history. If you take the time to take a comprehensive medical history from your patients and truly listen to them the answer is there. It is slapping you in the face. It cannot be ignored. Much like my own experience with my heart, the answer was there. I even provided the answer, but no one took the time or energy to listen.

There is no greater frustration or pain than being routinely dismissed and invalidated when you know something is horrifically wrong and you are facing your death. Just because a patient does not look sick does not mean they are not ill, that they are not in a critical health crisis.

Today, I’m going to start speaking through this blog in the hopes that I may be heard. I will continue to support and fight for family and friends, but I am also going to start advocating for myself and speaking my truth. It turns out, that I have a lot to say. This has been exacerbated by the fact that the vibration that has plagued me since the first heart surgery has become even more pronounced, more invasive. I am not going to lie. The recover from this second surgery has been extremely difficult. There have been many setbacks and challenges. They continue today. The bottom line is, this did not have to happen. Had someone taken the time to really listen to me, to hear me, this may have all been avoided. So today, I implore you to speak. Please know that there are others out there, like me that understand what it’s like to not be heard. Please know that I am listening and if you continue to speak, maybe others will hear your voice.

For information about heart conditions, please contact the American Heart Association.