Click the links below to view the Patient Information Packet or MG Response Flowchart written by Rebekah Dorr at MG Unmasked. Or right click either link and click “Save Link As” or “Save Target As” to save the PDF to your computer.
As with many things, time and experience allows for a better understanding of more complex entities, chief among them are medical studies with a language all their own. Over the years, I’ve learned that not even medical studies are immune to poor scientific construction, physician bias, poor education and assumptions. Increasingly, these studies offer poor comparative data and incomplete, equitable analysis. This, alongside attractive and misleading headlines within medical news reporting, makes for a rapid spread of information online without healthy accountability.
This makes me very mad as both patient and advocate, because the information is many times a segway to crucial decision making for patients facing difficult medical situations and attempting to weigh the outcomes of these decisions.
Thymectomy for a long term treatment with MG has long been considered controversial with physicians and riddled with inadequate studies and poor data. This leaves the patients with a lot of questions and too few good answers.
The latest issue that reflects ongoing medical reporting buffoonery involves comparing newer thymectomy techniques and comes with a catchy headline “Complete MG Remission Seen as More Likely in Robot-assisted Thymectomy”.
Sounds like amazing news! Until you actually read the study and summation.
1.) The author takes the time to discuss in a rather disparaging way, the longest standing thymectomy surgical technique and also the most controversial, trans-sternal thymectomy where they access the patient through the sternum bone. It sounds scary and as a post trans-sternal patient myself, I can tell you it is no simple thing! But I can also tell you that this approach has it’s strong benefits both during surgery and in the long term that is often ignored or skewed in reporting. The author here focuses on the negative potentials of trans-sternal without balancing it out with the positives and doesn’t offer comparative analysis for surgical visualization, doesn’t detail the inherent risks that lower visibility can bring with the newer approaches, doesn’t offer information about how complex Thymectomy really is and how this original method allows for the best field of vision for the surgeon – good news for the patient should their thymus have complex features or entanglements inside that they couldn’t predict – and they didn’t take the time to offer numbers to compare relapse and remission rates so that the reader could understand what the risks are long term in light of the new study.
The focus was decidedly negative and wholly incomplete. There was no reason or value for the author to bring this surgical approach up as it is not analyzed or referenced in the actual study, offering bias and lazy comparisons for an article attempting to help the reader understand more about Thymectomy.
2.) The author then spends the rest of the time discussing two other surgical procedures that were actually studied and compared by researchers, hi lighting the rate of blood loss and hospital stay comparisons, this time offering general but very limited data.
Never again does the author compare the trans-sternal, in spite of it’s multitude of studies and history of being used for more than 5 decades in MG. This makes the title article decidedly false, mostly by omission but also through inference of fully exhaustive comparisons. The inference that robotics offers the best remission outcomes without stating something like: when compared to VATS Thymectomy, it allows ambiguity and omission to lead to a conclusion that is hyped and murky. The author never bothers to correct this even in their conclusion in spite of apparent awareness early on that other methods are used and influence patient choice and clinical outcomes. I take great issue with this type of journalism, especially with medical news.
3.) The author goes on to define “complete remission” as being symptom free for at least a year and off mestinon (pyridostigmine bromide). This is not accurate. Complete remission is a patient with no symptoms for at least one year and off all medication. Otherwise, the patient would be considered stable and under pharmaceutical remission, a very different animal.
4.) The author then briefly acknowledges the researcher’s admission of poor comparative data between the VATS and RATS procedure. “Another potential source of bias, they added, might stem from the unequal follow-up period between the two groups. Those who had RATS were followed for a median of 5 years, whereas those who had VATS were monitored for a median of 12 years, allowing for an increased possibility of relapse.”
That’s a huge difference!!! And it matters incredibly so when you are talking about remission and relapse! The researchers have no idea what occurs past the median time of 5 years as it relates to remission or relapse with robotics, yet both the author and the researchers feel comfortable still make so grand a conclusion!
The researchers persist that “RATS allows for greater precision and more successful removal of the thymus than does VATS.”
Precision due to delicate and refined tools of a machine instead of a human hand, does not always equate to a better or more successful choice, even though precise cutting is likely increased with this technique, it doesn’t account for field of visualization or any complicating factor that they cannot predict beforehand including enlarged thymus glands, horns on the gland, a gland that is pressing on or wrapped around phrenic nerves (what allows us to breathe), the heart, lungs and so much more.
Additionally, this comparison is unequivocal and it’s scientific premise is faulty. By what standard are they defining more successful? Their success is studied only in short term with multiple other conditions for success. They focus mostly on remission based on their shorter post operative observations but fail to gather data on long term relapse rates, a strong key in assessing true success. Relapse rates should be studied and compared to in equal measure of remission rates and length of follow up.
If RATS has a fairly equitable or advantageous outcome at the 5 year mark but is found to have a higher relapse rate at the 10 or 12 year mark compared to VATS or trans-sternal, that makes it a less successful approach and a risk a patient should be made fully aware of when making their surgical choices.
Relapse is just as important, if not more critical an analysis to be made when considering thymectomy choices than initial remission rates in early follow ups. A patient may wish to choose a surgical approach that has less initial pain and less time in the hospital, because that sounds great and honestly, who wouldn’t? But if that patient knew their chances for remission were extremely restricted to dependency on age and previous remission and/or might have a stronger chance of the disease coming back, the short term look of less pain might not look as appealing.
Additionally, it is not detailed the populace studied, which would give a better understanding of other cofactors that may also be involved besides age of onset and subsequent date of surgery after onset. For example, all the same subtype of patients (achr positive or seronegative), patients with similar treatment regimens i.e., controlled on mestinon and steroids, similar age groups, disease onset etc… Not only would this be considered a better scientific foundation to build upon, it also gives context to what is being studied and if the success or failure is truly due to the proposed solution. Without this information, we are left to wonder if other factors besides technique had influence in the outcomes.
Their acknowledgement that “patients who were younger, and/or had entered into remission before surgery, had higher chances of a complete remission at follow-up” is concerning. Younger is not well defined here and significantly limits the available population as the average onset for women is their 2nd and 3rd decade of life and the 4th and 5th decade for men. Previous disease remission is also an odd cofactor to have in the mix to make a contingency in success rates. It would mean these patients are more likely to have had sporadic, short term remissions on their own, apart from surgery, muddying the waters as to the true source of success in these thymectomy cases.
The researchers also fail to note that age and surgery within a certain time limitation of disease onset is true and well studied with trans-sternal thymectomy as well. This doesn’t seem to change regardless of surgical approach. Age matters in greater chances of success across the board but it doesn’t mean there won’t be success without it as well and is not unique to RATS or VATS Thymectomy.
And I’m decidedly sad that a research team felt that they needed to note skill set also likely lends a hand in better recovery and remission rates. That’s a no brainer, folks. This goes for all surgeries and procedure outcomes.
To be fair to the reporting author, the study was poorly done when looking at their final data and conclusions, giving an illusion of success that may not be merited and certainly leaves a lot of questions. However, the onus is still on the reporter for creating hype and overall untrue headlines to draw clicks while also offering sloppy medical reporting and failing to ask important questions in their analysis.
The headline is deeply misleading and frankly, irritating. Patients face major decisions and fear looking at whether or not to move forward with a thymectomy and headlines/articles like these do not help the physicians or patients make the best choices.
Equally or perhaps more concerning is the study itself. The study relies heavily on drastically shortened follow up times by cutting the long term assessment by more than 50%! How can their conclusion be that it holds an edge in complete remission when their compared follow ups weren’t comparable?!
It also seems to require a young age and previous remission (although they don’t state if it is short term, sporadic remission or pharmaceutical remission) as strong cohorts in favorable remission outcomes! This very much matters when looking at surgical success. Is the surgery successful due to technique and method or because of outside cofactors that influence that outcome? Without a control group, we don’t know the answer to that.
It also fails to be exhaustive since it is only compared to one other surgical type and doesn’t offer a well established control group to possibly compare the same subtype of studied patients who chose no thymectomy. While their intent was and is to study and compare only two surgical types, it leaves the patient without a full picture to understand all of their surgical choices and risks with newly studied comparative data. Researchers and surgeons often cite the reduced recovery time and peri surgical risks as obvious reasons to chose VATS or RATS, but doesn’t ask the question if it is best choice for the long term and this study also fails to ask that question as well. If a patient had a choice to deal with a potentially harder recovery for a short time with a better long term guarantee, that needs to be part of the discussion.
This is not the first time studies have been published and even lauded that were poorly done, failed to analyze crucial cofactors, study and include contextual, critical information and other important clinically important criteria, but it’s publication begs for discerning scrutiny that it seems isn’t readily coming from their peers or from news sites.
Frankly, MG patients deserve better.
Please don’t assume that a surgeon will read this and understand the issues that persist with in it. Have a conversation and ask what they feel is important to consider in these situations and see if what they hold of value is what you do.
Below is the link to the aforementioned study and article so you can check it out for yourself and see if you agree or disagree with my concerns.
Author: Rebekah Dorr Director of Patient Advocacy: MG Hope Foundation
We read the well meant phrase often enough; “let me know if you need anything!” as we stare back through a screen, connected in the most disconnected of ways. But how many times do we find ourselves wishing that the cliched, albeit good intentions of another translated into practical help and support where we need it most, without the awkwardness or shame of having to send a message of S.O.S.?
Myasthenia Gravis came into my life like a whirlwind, it’s symptoms quickly escalating from severe fatigue to respiratory weakness in a matter or ten days. My family and I found ourselves in the emergency room four different times within a two week period, so severe and fast moving were my symptoms. The diagnostic process involved two spinal taps just 48 hours apart; the second spinal tap left me paralyzed from the waist down due to several rare complications. I was sent home a week later after being kicked out with a security escort, still paralyzed, after we insisted something was very wrong.
I spent the next six weeks in a wheelchair at home or confined to a bed due to the paralysis and my increasing weakness.
Concerned friends, family and neighbors dropped by and brought meals or called to check on us and we heard each time the invitation to call if we needed anything. But we found ourselves unsure how to ask, the needs were so great. One evening however, a friend of the family dropped by unexpectedly after a long day at work and he had with him a special gift; he had taken the time to build me a ramp so I could get down the step from my front door in the wheelchair.
After he was done installing it and I got to test out my new gift of freedom, he sat with us and visited. He looked at me and said something I will never forget; “Rebekah, that ramp out there? It is temporary. I made it that way on purpose because I believe that you’re going to walk again. And I want you to hang on to that.” He spoke with the grace and love of a father and I wept at his gift, overcome with emotion. He saw a need we didn’t know how to articulate and he showed up without us ever picking up the phone.
It has been seven years and like he promised, the ramp was needed for just six weeks, but it taught me a crucial lesson that I have never forgotten. We have opportunities in our lives to walk with our fellow human beings throughout many ups and downs. Some of us choose to stick around only for the good moments and others still simply don’t know how to respond to the bad, but those choices of investment change lives.
Over the years, I have heard countless iterations of the invitation to call or reach out if I need something and while I always appreciate the heart that is behind such an entreaty, I find myself thinking back to the unexpected gift of a ramp and how a friend took the time to quietly walk with me and show up in the middle of the messiness.
Sit with me during treatments, take me to the doctor, help me weed my flower beds or cut my grass, bring meals and paper plates, come sit and talk with me and forgive my messy home, call me once a week and tell me you’re thinking of me. Yes, it takes time and effort to pour into someone who is hurting, but it isn’t complicated. We just need you to show up, no matter what you are able to offer, because it matters far beyond what you could ever imagine.
I believe we have to learn how to walk with our fellow human beings in this life; how to listen with patient grace, how to find ways to use whatever talents or resources we have to connect, support and stay the course when things get hard and life overwhelms us. It is easy to offer the entreaty that we are available to someone if the person struggling takes the time to call, but it can be hard for us to take you up on that. We don’t want to burden you or interrupt your life and sometimes, the truth of it all is that we just don’t know what to say, we just need someone to show up and let us know that we still matter.
You see, it is easy to type something online and walk away when life is business as usual but it is a whole other thing when suddenly you are the one in need of support. After all, we once were like you too. Some come walk with us, let us tell you how we really are, no remedies or advice, no cliched responses; just the patience and grace to hear and affirm the truth of it all.
Walking with us doesn’t have to be complicated, it just takes a choice.
I was officially diagnosed with Myasthenia Gravis in the spring of 2017, even though I began developing symptoms two years earlier. Shortly after starting two daily medications, I was getting my symptoms under control and learning how to navigate the MG mindfield.
Three months after my official MG diagnosis, I’m boarding an airplane for a nine day, four island adventure in Hawaii. I was going with a best friend and for both of us, this trip would be our 50th state to visit.
Our first day in Hawaii was spent in Honolulu, driving around the island of Oahu and enjoying our first real Hawaiian food and the beautiful weather. The next day we were up early at 5:30 in order to get to Pearl Harbor early.We had to be in line at 8:00 am in order to get tickets to the USS Arizona Memorial.After touring Pearl Harbor, we visited some other attractions before heading back to the airport, turning in the rental and catching our flight from Oahu to the Big Island.
Arriving at the Kona Airport on the Big Island, it was late in the afternoon. We toured Kona, had a great dinner and got to see some of the sights, then called it a day. The MG was starting to cause a few problems, primarily neck weakness, but I was keeping up my meds and felt confident it was under control.
Getting up early and checking out of the hotel, we head for Mauna Kea, the tallest point in Hawaii. At 13,806’ above sea level, it can be exhausting even for healthy people, but what incredible views.We followed the recommendations of the Maunakea Visitor Information Center and spent an hour at their 9,000 foot elevation location. This gave us a chance to get acclimated to the thinner atmosphere and buy some over-priced souvenirs.
I was really surprised to find I could breathe easily at the summit, and after taking in the views, it was time to return to sea level and tour more of the Big Island. We visited Volcanoes National Park, walked on old lava flows and witnessed the lava glow at night from the Halema’uma’u Crater. We even made it to South Point, the most southern location in the U.S. After that, it was back to the hotel and grab some sleep. The next day was when my MG really started rearing it’s ugly head.I could barely hold my head up for more than a few minutes, and if I looked downward, I couldn’t raise my head back up without using my hands to help. I tried a slight increase of my Mestinon dosage, and that only resulted in abdominal spasms and more frequent stops looking for a restroom. The neck weakness remained.
Departing the Big Island on Hawaiian Air, we flew over Maui, our next destination. We had to fly to Honolulu, deplane, had a short layover and then catch a different plane to Maui. The airport was barely air conditioned, and the outside temperatures were typical tropical weather, 80’s and humid. Dragging my suitcase, CPAP and carrying my camera bag, my head was now permanently hanging on my chest if I can’t manually hold it up. I got a few strange looks from the flight crew but no one said anything
On the flight, I discovered that if I could sit slightly reclined, I could essentially balance my head on my shoulders and hold it up. While seated I could turn my head right and left with no difficulty, but if I was walking, I was looking down. And when you had to return your seat to an upright position on the aircraft, I was again forced to support my head with my hand.
The remainder of my Hawaiian vacation was filled with beautiful sights, some great food, and some scary respiratory issues that almost sent me to the E.R.Because we had to carry all of our belongings from island to island, each flight was labor-intensive. Each time we landed, we had to then carry our belongings through the un-air conditioned airports, and load them on the airport shuttle to the car rental facility. Then unload everything at the car rental, load it in the car, then head to the hotel and unload. I think that this was my real downfall, all of the loading and unloading of our carry-ons and luggage, and multiple times we had to do this for each excursion. I was fortunate that my friend was a Respiratory Therapist and she kept a close eye on my breathing. We considered cancelling the rest of the island visits and just rest in Honolulu, but I felt confident we could make it.
We continued the trip visiting Kauai, the last of the four main islands of Hawaii. We had now seen Pearl Harbor, the Mauna Kea Observatories, and the active volcano at Volcanoes National Park. The beautiful beaches of Maui, the actual gates for Jurassic Park, all have been visited.Almost all of our travel checklist was completed.
On our last night in Hawaii, we returned to Honolulu for our return flight home the next day. We were fortunate to get tickets to the premier Hawaiian Luau in Honolulu, Paradise Cove, but the MG was really getting out of control. Now I was dealing with neck weakness, difficulty swallowing, and GI issues. The luau was outdoors, but it was late afternoon and thankfully there was a nice breeze. The ocean breeze and the views helped moderate the heat and humidity.
The food was awesome, but in order to eat it, I had to hold my head up. I discovered holding your head up with a hand beneath your chin just doesn’t work. I’m trying to chew and my head is bobbing up and down like a bobble-head doll. OK, time for Plan B. I used my left hand and pressed against my forehead, then fed myself with my right hand, all the while trying to lean back slightly in my seat. I was successful about 80% of the time, and the unsuccessful 20% was accumulating on my shirt. Yes, people were glancing in my direction occasionally and you could tell they had no idea why I was wearing my dinner. It was certainly an evening to remember.
In Hawaii, I learned that “Aloha” is used for both “hello” and “goodbye”. However, the true meaning of “Aloha” is that of Love, Peace, and Compassion. I can honestly say that Aloha describes the Hawaiian people, they were truly the friendliest, happiest people I’ve ever met. “Aloha” is also what I get from this wonderful Myasthenia Gravis Unmasked Community, and from Rebekah, our brave, compassionate and beautiful leader.
I have written this short story to hopefully inspire my fellow MG Warriors that travel with MG is not only possible, it can be enjoyable.Just remember to consider all of the additional challenges you will be facing on your trip. Remember the weather can be a significant factor with MG, and so can significant elevation changes. I was very fortunate to have a good friend with me that was understanding and supportive. I would certainly make this trip again, but next time I would take it a little bit slower. I don’t intend to let MG control me, I’m going to control it. I just have to keep learning from my mistakes.
I am writing this letter on my own behalf. I feel it is necessary although not common yet for patients to be advocates for themselves in these situations. I am an honest person, a wife for ten years, mother of two children eight and ten, college graduate with honors, a loyal employee, and U.S. citizen. I have gone through dramatic changes in the last four years. I was diagnosed with Myasthenia Gravis when I was approximately 23 years old, in spite of this autoimmune neuromuscular disease I finished college while working full time.
Upon graduation I became a surgical/ medical instrument representative for a well know company. This job required me to travel, sometimes a great distance, on an almost daily basis. Prior to September 2014 I had Myasthenia Gravis, with daily symptoms and worked fulltime. At that time, I didn’t realize I was pushing my body too hard, therefore suffering physically and my Myasthenia Gravis (MG) not improving. There were times I couldn’t speak and would have to cancel appointments, I didn’t entertain clients where food was involved as chewing food was difficult at times or I would have to use the restroom multiple times due to rapid transition of the bowels, a side effect for me from the mestinon.
Somedays my body wouldn’t move well or my fingers at all, somedays I would get sick and it would take weeks to recover. I would then have to cancel appointments again. My life as I knew it came to an abrupt halt in September of 2014 when I had an MG crisis and was put on life support in hospital near the town I was living. I was on life support for over two weeks at times not know if I was going to live or die but I fought because of my family. During the month of September 2014 I went to the emergency room as I thought I had a cold or bronchitis. I planned on being back home within four hours per the emergency room protocol. Four days later I remember waking up and not knowing where I was, why I was in that room, why I was hooked up to machines, why I couldn’t move or talk, and so on. I remember waking up the next few days having the same feeling. I was sent to the Intensive Care Unit on life support, had bilateral chest tubes, the Rhino Virus, the Entero68 virus, pneumonia, was given paralytics in the Emergency room which is contraindicated for a myasthenia gravis patient, was given antibiotics that was verbally communicated and documented was a contraindicated medicine for a myasthenia gravis patient, had pneumothorax, and had pneumoperitoneum.
After three weeks on life support and being bed ridden I had to learn to breathe again, which is something we are born doing naturally, so to learn how to do this and accept it emotionally was overwhelming. I also had to learn to swallow, control my pee, poop, talk, sit, stand, walk, exercise, and more. This is just the physical part I had to do in the hospital. The emotional part came later. The ICU doctors and team had to do their part as well to keep me alive, with daily bronchoscopes for eighth days after being extubated. I had chest tubes having to be reinserted after pulling them out too soon. I also had a wound to my lip due to being intubated resulting in permanent scaring. Three years has passed since that incident.
I have gone to multiple physical therapy appointments, counseling appointments, primary care doctor appointments, chiropractic appointments, massages, pulmonologist, neurologists, rheumatologists, dermatologist, and more. I have done 16 doses (four rounds) consisting of one day a week, 4-7 hours each day, for four weeks of Rituximab. Approximately 135-225 doses (forty-five rounds) of intravenous immunoglobulins (IVIG) consisting of 3-5 days, 3-5 hours each day every four weeks. I currently am having a hard time with vein access for the (IVIG). Having to do this treatment plan makes me lethargic, I sometimes have flu like symtpoms, my immune sysytem is lowered, I tend to get infections easier, I am unreliable due to my phsyical pain and emtional truama, I dont know when the Rituximab is always needed therefore making long term commitments is difficult.
The physicaly therapist have done all they can and the pain that I have daily is not something they can address or fix. I have been going to counseling appointments over the last two years. I have come a longway but still have problems with large crowds, germs, being away from home for very long, going anywhere overnight, going to any type of healthcare setting, watching anything hospital related on television, and more. I have tried to volunteer in the community but always tend to only do half or less of what is planned initially due to my current condition. I go through daily emotional trauma from the experience. I currently have anxiety, was diagnosed with PTSD, and insomnia (side effect of prednisone, mestinon, anxiety and PTSD). I have daily physical trauma from the experience. I currently have pain in my neck, thoracic and torso area.
I have numerous scars that hurt with the changing weather. My immune system is extremely low due to a previous thymectomy, being on prednisone, doing regular IVIG treatments and the Rituximab treatments. My body, and emotions are not the same as they were before, the current medical treatments needed for my body keeps me from be reliable and committed to things beyond my control. In my opinion, I came out of that tragedy a totally different person and I believe I will never be the same person. I had counseling, have anxiety attacks and am afraid to travel over two blocks to take the children to school preferring not to even leave our home (my safe place). I can no longer talk comfortably to people and do everything possible to avoid crowds. I try to volunteer when I can but have to cancel a lot. The worst part is I found out the hard way that autoimmune disorders can be passed on to your children. My son was diagnosed last year with colitis. I pray everyday a cure is found for my son and I. Thank you for listening!
Patience- the capacity to accept or tolerate delay, trouble, or SUFFERING without getting angry or upset.
The natural doesn’t make an ounce of sense. Here’s the deal. Surgery was started, incisions were made, the robot was put in place and then my oxygen levels dropped to dangerous levels so they had to stop surgery. The surgeon thought that maybe there was a blood clot in my lung- which is common after IVIG treatments- took me for x-ray and NOTHING! No explanation. They took me to ICU where it took 3 hours for me to come out of the anesthesia… which resulted in me needing the respirator. that was the pits! Panic and discomfort are the words to describe it.
Once I got my bearings I was told the news… no thymectomy. I couldn’t believe it. Everything that had been done to prepare for this surgery- my students not having their teacher, the unpaid leave, the expensive treatments, the pain and discomfort I was feeling- all in vain. How could this be?!
“The capacity to ACCEPT SUFFERING without anger.” I must accept that God knows what is best and for some reason He stopped the surgery. I cannot get wrapped up in the expenses, the delays, the suffering. I’d had very specific prayer requests… for the anesthesia to not make me panic, that I wake up normally from the anesthesia, for my recovery to go well, and for my cure. I didn’t even realize when they gave me the anesthesia, the recovery is going well (my MG hasn’t flared up at all- this is HUGE) the respirator was only for 3 hours Vs days, and my cure is up to Him.
So even though this didn’t go the way we’d hoped we still hold steadfast to our hope in Him.
“But blessed is the one who trusts in the Lord,
whose confidence is in him.
They will be like a tree planted by the water
that sends out its roots by the stream.
It does not fear when heat comes;
its leaves are always green.
It has no worries in a year of drought
and never fails to bear fruit.”
In November 2016 I ran a full marathon for the first time, the following May I was in the hospital. My MG came on quickly and hard, in less than 6 months I went from running daily and being in the best shape of my life to being unable to lift my head. I first experienced double vision on and off and ended up going to urgent care when my face began to droop. Doctors first thought I was having a stroke since I was so weak and had some unusual symptoms for someone my age. I was lucky enough to find an ophthalmologist who referred me to my neurologist who had seen MG before.
During one of my lowest moments with this disease my husband found me on the floor barely breathing and had to carry me into the emergency room. Last year I spent a total of 18 days in the hospital and had two crises and was intubated. Like a lot of us MG warriors I am still working to find that magical combination of medications and treatments that allow me to function. You know you’re cool when you’re in your 30’s and on first name basis with your pharmacist. I now walk with a cane on bad days and the double vision has never completely left.
I am still coming to terms with being unable to do the same things I used to while trying to keep hope that I will go hiking and running like I used to. There are definitely days I still get depressed about everything that was taken and don’t handle it well. Since my diagnosis I have finally finished college and make big strides in my career, I might not be able to control my MG but I am going to make the most of the time I have while I can.
(The photos below were taken a little over 6 months apart.)
Fair warning: this is an editorial piece born of my own experiences and passion. It is not rooted in any singular experience but in an education shaped over time and hands on experience all across the world. This is not meant to be reflective of anything other than my own opinion and is not intended to be taken as an application to all.
I hear this particular phrase bandied about so often that I think I would repeat it in a coma. “The best thing you can do is be your own advocate. You deserve xyz care so don’t be shy in asking for it” and dozens of other well meant but poorly understood iterations. And over the years, I find it increasingly tone deaf. Don’t get me wrong. There is absolute truth in this ideal and I strongly believe in self advocacy!
I also have learned over the years as I’ve advocated for myself for the past decade, and now for others the last four plus years, that the ideal and reality often don’t mesh. Advocacy (be it from the patient or other person) is often seen as a negative challenge from practitioners. (I’m speaking broadly here and with an acknowledgment that this will never apply to all but I am speaking to a majority experience.)
So why aren’t we talking about it?
Doctors, PA’s, NP’s, even nurses and RT’s etc., struggle with knowing what to do with patients like us who don’t fit into averages, studied percentages and easily determined criteria. With complicated and rare diseases like MG, there is a sharply increased necessity for contextual understanding and the ability to humbly stay open when faced with a patient whose disease you know nothing of.
Perhaps greater still is the care provider who has a perception of skilled knowledge without truly having skilled knowledge. This in and of itself is just as challenging as those who are ignorant, perhaps even more so. These men and women up and down the hierarchy of patient care are often the most adamant in refusing to listen to a patient, caregiver or advocate presenting concerns about their triage, dismissal or care plan. They insist they are well versed and refuse to listen, regardless of how official your resources or how plainly clear the research that stipulates the opposite.
These providers increasingly show hostility and retributive action against those who do speak up and advocate, putting the patient in a serious dilemma between the gamble of choosing silence and poor care or advocacy and the strong potential of anger, denial, dismissal, discharge, patient abandonment, false psychiatric diagnosis or dangerous mismanagement
There is also a concerning trend in their difficulty in removing bias when the presenting patient “looks fine” and whose complaints aren’t readily found in initial (and correct) testing. Lack of salient, primary knowledge on Myasthenia Gravis or accountability for published works and writings have led to extremely unregulated and often incorrect information which is then clumsily applied to the patient who may or may not be in distress.
When the rubber meets the road, reality screams back that the idealized vs received (reality) attitudes are vastly outnumbered.
So here we have a patient community in MG who doesn’t “show up” in your standard triage and vital checks, nor is easily “seen” and often deviates from standard presentation. Particularly in moments of surgery, exacerbation and emergency, this becomes a point of fear and conflict. This often leads to dismissal from the moment triage begins to ER physician evaluation and can carry through into units with bedside care and respiratory therapy intervention, sometimes at the patient’s most critical moments. And when the dismissal, outright refusal of care, disbelief, inappropriate action, wrong medication and misdiagnosis of psychiatric disease comes into play, as it often does, the patient is left to intercede on their own behalf, IF they are physically able.
Well meant, the advice to simply advocate for oneself and seek or even respectfully demand specific care is rarely well met. In fact, part of the criteria for somatoform (psych) disorders, is a patient who believes their doctor is wrong or insists they are really sick.
And in spite of placed channels for seeking out the care you deserve via charge nurses, the administration and even some hospital advocates, it is almost unheard of to see them over throw or challenge a physician’s treatment course or dismissal. (Again, there are always exceptions but I have spent more time than I can say advocating and talking to nurses, charges, hospital advocates, liaisons, floor managers, and administrators of all stripes of importance, and the intended patient protection morphes into physician protection. Some administrators have even laughingly told me, “good luck getting the doctors to talk to you. They don’t even call us back.”).
In fact, it has become so highly politicized within the hierarchy of medicine that other physicians tend to shy away or refuse altogether from the potential challenge of their peers. Second opinions are often riddled with reticence, refusal to contradict or ineffectual action.
What should be a fail safe for patients can quickly and easily backfire and cause clinicians, nurses, RT’s etc., to antagonistically dig in further. And when the tools structured to give patients a sense of protection against these issues are ignored or used against the patient, the original and well placed intention to advocate can turn into a nightmare.
Emotional trauma from such encounters is not on the decline, even as awareness and patient empowerment is being pushed more and more. Patients often fear seeking out the ER or hospitals and ignore critical symptoms due to previous encounters that left them feeling abandoned, untreated, mistreated, bullied or placed in jeopardy.
My long winded point is this…like many things in life, it’s rarely black and white and often doesn’t work out in real life like it does on paper. The idea is not to discourage advocacy. I highly encourage it. It is part of why I spend so much time trying to share information and educate so you feel more empowered when these moments come. But I wish there was intellectual honesty within our own communities and within medicine about what really goes on within the walls of hospitals and clinics.
Encouraging advocacy without understanding what that demands of the patient or their loved ones and the potential negative consequences does not propel us towards a future where real change and positive movement occurs. It instead keeps us in places of antagonism with those meant to treat us.
And while it can be argued that medical staff mean well but it’s just “too rare to expect them to really understand”, I would say that is not applicable to the conversation. Lack of knowledge or those who mean well does not translate into bias, arrogance, refusal to listen to the patient, their advocate/family member/caregiver, pulling care, refusing care, labeling, assigning psych or drug seeking status without exhaustive proof etc…has nothing whatsoever to do with a disease being rare. It’s an excuse that is harmful. Lack of awareness is readily solved. Refusal to stay humble and learn has no excuse.
Perhaps, instead of offering an entreaty left to ambiguity, (after all, advocacy means a great many different things to many people) we can begin to truly empower by teaching when and how to utilize the placed channels of protection, what to do when advocacy is working against you and how to help others help you. Advocacy, if nothing else, is a honed skill, forged over time and is found more often in offense than defense.
Hundreds of thousands of rare disease and chronically ill patients like ourselves fight the same battles of fear of hospitals and ER’s, negative consequences to standing up for yourself, damaging misdiagnosis and assumptions that can follow you every time you need future care. Far too many stay home instead of accessing help because the help we thought would come doesn’t and so we learn to stay away.
It is my hope that intellectual honesty and seeking positive encounters whenever possible will press in new roads that lead to shattered stigmas and bias that harm clinical trust and individual well being. And maybe, just maybe, we will learn to stop uttering “just advocate for yourself” as though it’s a curative without offering up the strength of walking with one another and learning what it means together.