Do you ever feel so tired from the fight?
I think patients more than anyone else, know what I mean by this the most. Not only am I fighting just to stay alive, but to also feel well while doing so. How about fighting to be heard? Or just to be diagnosed?
Do you also fight to have people understand you or what you're going through? Have you ever fought for access to care or treatment?
Don't even get me started on what it's like to get insurance to cover stuff! I'm just burnt out from thinking about it! I'm sure I'm missing some of what you're tired about fighting for in this arena, so feel free to share it with me!
I'm working on a project right now for my NeuroEndocrine Patient Advocacy Group. The project is about the path that many patients take to get a diagnosis. We are exploring the long list of symptoms and the way that we are often treated by medical professionals: often feeling unheard, and many times, how there is great inequity when it comes to access to treatment.
It has become more and more clear to me over the years that every single patient needs someone to fight for them. As I've mentioned many times, my Mom used to fight for me. So what happened when my Mom was no longer there to fight for me? Well I guess I was promoted to be the "fighter". I took up my own shield and sword.
I have been hurt by so many medical professionals that I naturally have a lot of trauma to work through. The problem with trauma is that it's always there. It can be activated and re-lived by talking about it or by being re-victimized. For years I was pushed into "talk therapy", realizing I was being re-traumatized with each session, I finally concluded this wasn't the way at all in which to deal with it. My trauma is something that I'm always working on healing. That is a whole other post but I bring it up because I see people being put through this all the time. I can recognize it easily and I'm not sure how many medical professionals even realize how far and wide it reaches. Can people in positions of power recognize when they are causing trauma? Doctors, care aids, specialists, insurance providers, and government officials, all fall into this category of people I'm describing here because what they write down about a person can make or break their access to treatment. Those seem to be the people who can cause the most harm and yet I wonder: how many of them went into these professions with the intent of helping people and don't even realize when they're hurting and preventing access to proper care?
For example, I had had a few very scary hypoglycemic episodes after starting insulin therapy, 2 of which were caused from lack of education. They were trauma inducing once I realized what I did, and especially after the many years of hypoglycemic episodes both before and also after my surgery. My blood sugars change very rapidly, especially when I'm going low. It's extremely stress inducing to see the arrow going straight down now.
My last hypoglycemic episode a few weeks ago kept me up for the entire night. I was consuming juicebox after juicebox just to keep my blood sugar numbers above the minimum. I didn't take any insulin at all the following day and for many days after that my insulin needs were quite minimal. I don't know if I was experiencing the honeymoon effect, or if that was when my tiny pancreas decided it wanted to "help" make insulin again. This experience led me to realize that once I give myself my long-acting insulin, that's it for a 24 hour period. I have to deal with any consequences of the 20% remaining beta cells decide to help again. Certainly consuming high amounts of sugar to combat these episodes is not helping my weight or my pain levels either. With an insulin pump, the long acting shot is eliminated and the pump will dose an adjustable basal amount of insulin all day long as required. This would mean that I could adjust the basal rate and if my pancreas decides to "help" again, I would not subjected to treating with high amounts of sugar on those occasions. I strongly feel that it would help me with these hard to control blood sugar levels I'm experiencing.
I recently had the pleasure of meeting with an expert in diabetes management. A brief appointment, as they all are nowadays, with never enough time to truly dig in deeper with people like me with extremely complex medical issues. I could tell that the diabetic specialist before me was very bright. I'm sure for the 99% of the people that are getting help at this clinic that they're in the best place possible. But things seemed to fall apart when I asked for access to a treatment option that other insulin-requiring diabetics have access to. I'm not your typical diabetic patient and I was left feeling misunderstood.
We had a disagreement about my diagnosis, even though I'm missing 80% of my insulin producing cells, as well as requiring PERT therapy to digest my food, I was being treated as a type 2 diabetic as though it was a lifestyle choice to become insulin deficient, which also means that I have limited or no access to the best CGM or insulin pump therapy. Not to mention that the drugs that are harmful to people with my condition, causing pancreatitis or more thyroid issues, or make me extremely ill, were pushed upon me for many years instead of just using insulin that my body needs. Being labeled a type 2 diabetic and not Type 3C also has disastrous results for patients like me when dealing with insurance companies and access to government programs.
Suffice it to say that any person with a type 3C diabetes diagnosis due to surgery, by far has had a horrible journey by the time they're diagnosed, possibly one of the hardest paths to travel to arrive at a diabetes diagnosis, often riddled with multiple bouts of pancreatitis attacks and/or cancer diagnosis, then major life changing surgery, months of pain and recovery and possibly years of digestive issues on top of the blood sugar issues. This is a hard path. I know. I lived it and have held many hands over the years after they too went through it. To be told that I'm type 2 and I "don't qualify" feels dismissive and cruel after all of that. But to feel like I still have to fight for better treatment options after all of that is a slap in the face.
There seems to be no gray area with some medical professionals who insist that in order to diagnose someone as type 3C, they must have ZERO of their pancreas left after surgery and/or and must satisfy some magic formula of serum test results. This seems to go against most, if not all of the medical literature that I interpreted that say that of all of the partial pancreatectomy surgeries, the distal pancreatectomy had the HIGHEST incidence of developing diabetes (type 3c) as a result of the sheer volume of beta cells removed. This then makes me question: when a type 1 (or LADA) has antibodies that attack the beta cells of the pancreas, are they allowed to have ANY healthy insulin producing cells to be able to be called a type 1 or LADA? What if they have the antibodies, but the insulin or C-peptide levels are in the low-normal range or have a declining pattern over the years? Then are they also called type 2 and being denied better treatment options? Being stuck on numbers and formulas, without looking at the overall picture is like looking at a Monet painting up close. This is something I always talk about being a problem with modern healthcare. We are so busy looking at the trees (the sum of our parts) that we aren't seeing the beautiful forest or coming up with ways to help the forest thrive!
I felt unheard and stonewalled. I was never asked why I wanted the treatment option, I was just told that it wouldn't benefit me.
But I digress, I'm NOT the one who went to medical school and built my entire career on learning this stuff. I've only lived with MEN1 for 31 years and blood sugar issues for 18 of those years. That doesn't make me any kind of expert, nor does pouring over medical journals every single week for over a decade make me any more knowledgeable about my own condition. Nothing I say matters if I don't have important letters after my name.
I find myself asking another question: What would healthcare today look like if our professionals lead with compassion and a mutual desire to seek to understand and learn from the patient, as a whole, rather than what is perceived to be from a position of ego and authority? I understand that medical professionals want to come across as knowledgeable and confident in themselves to evoke trust in their ability to care and execute a treatment plan. We can't possibly know how hard it must be to juggle the patient load that these people have these days, but we need to get back to the most important part of healthcare: compassionate communication. At the end of the day, what will benefit the patient the most?
I've also had the privilege of being in the care of physicians and other care providers who believe that they can learn from their patients. They're always learning and leading with compassion. To be in the care of these medical professionals is life changing for patients and makes us feel like we have someone fighting along side us, not against us. The professionals like this are the ones that I cherish and highly regard. They are the ones that belong on my team!
If you have people like this on your healthcare team, please let them know how important they are to you!
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