What do you do when your doctors let you down? As chronically ill patients, we spend an enormous amount of time researching our diseases, trying to find the latest treatments, the best remedies, the cheapest medications, the most educated doctors who may be able to offer us their expertise to give us our health back. We place our trust in these people. We pour our hearts out to them. We cry on their shoulders, we voice our frustrations, we follow their suggestions explicitly hoping that whatever they say will be the almighty cure that will rid disease from our bodies. Rarely do we stop to question, what if they are wrong?
In this day and age of the internet, patients are more educated than ever. They come into doctor’s offices laden with reams and reams of printed papers from the research they have done about their illnesses prior to ever seeing the doctor. This poses great challenges for healthcare practitioners. Gone are the days where the patient came into the office, the physician examined them, gave their advice, wrote out a prescription and the patient left, blindly accepting that what the doctor said was truth. Now, patients come to the office loaded with questions, their own ideas about what may be wrong with them, their own opinions about what treatment course they may like to follow and the greatest factor affecting healthcare ~ COST. The entire practice of providing healthcare to the sick and injured has changed and it is not an easy profession to say the least.
However, being the patient is not an easy role either. We must navigate the waters of choosing an MD versus a DO, a nurse practitioner versus a physician assistant, a naturopathic practitioner versus a holistic practitioner, a chiropractor, a shaman, a reiki master, an acupuncturist, a nutritionist, a dietician, or any number of physicians who happen to specialize in each specific organ system of the body. We could essentially organize a small army of medical practitioners to take care of us if we really wanted to address each of our body systems that are failing when it comes to Chronic Lyme Disease.
So, we have to do the research in order to become our own advocates. We simply cannot depend on one person to know everything about what is going on within our failing bodies and we cannot afford to hire the army necessary to take care of us. We put our faith in our Lyme doctors (LLMD-Lyme Literate MDs) because they are trained to know the most about our disease in the hopes that they will be flexible enough to alter our protocols as our disease changes rapidly. If we are lucky enough to also have a progressive primary care doctor on board, we have someone who is a co-pilot monitoring our general health who can address issues that are not related to our Chronic Lyme Disease. The problem is that we still have to manage the team. Even though we are the sick person, we can never let our guard down and just “be sick.” We are constantly studying, constantly researching, constantly looking for the next treatment that will help save our lives.
Unfortunately, the members of the team don’t always see eye to eye. One would hope that the ultimate goal would be the welfare of the patient but it doesn’t always work out that way. When a patient has been sick for a long time and they have tried many protocols without success, it can get frustrating for everyone involved. Then the blame game can begin and everyone starts looking at what has already been done and why it hasn’t worked. The person who usually suffers is the patient. They are blamed for not following orders, labeled as being “difficult” or too much to deal with and subsequently discharged from a practice because the doctor cannot get them better. This is devastating to a patient who is already suffering from an illness that is wreaking havoc on them physically and emotionally.
When a patient is discharged from a practice unexpectedly they literally go through the stages of a break up of a personal relationship. At first they are angry. They want to defend themselves and rebut everything that was stated in the “official discharge letter” they received in the mail. Bear in mind, I am speaking about a discharge from a practice when there was no significant incident that occurred in the office setting at their last visit (no argument, no outburst, no threats, no indication that a discharge was imminent). After the anger has passed, they go through a period of extreme sadness because they feel betrayed. They opened their heart to that physician. They cried with them, poured out their soul to them, expressed their fears, worries, secrets and hopes to them in the confines of the office with this person. The bottom line is that they gave them their ultimate trust.
After they have faced the anger and the sadness, then the reality sets in that they no longer have a Lyme doctor to take care of them. There are so few LLMDs in this country that their care just got very complicated. Finding a new doctor will become extremely complicated now. Not only will they have to increase their commute by multiple hours, sometimes in excess of 4-5 hours one way, but the wait time to get in to see a new doctor could take 3-6 months. The burden of their care in the interim will now fall upon their primary care doctor, if they are lucky enough to have one who has been on their team in the first place. For those of us who are critically ill with this disease, bedridden in my case, the concept of riding in the back seat of a car for a four hour journey to see a physician seems daunting to say the least. The effort it takes me to travel to go to my primary doctor who is two blocks from my home will wipe me out for the next two days. I cannot fathom what a trip of this magnitude will do to my health. I can only hope that after I attend my first visit with a new doctor 4 hours from my home will be that he will be willing to do telephone consults with me, knowing that I am overseen by a progressive primary care doctor close to my home.
After three years of battling this heinous disease, I have to remind myself that I have faced bigger battles than this disappointment. I will lick my wounds for a few days. I will bite my tongue and not write any letters that I may be sorry for later. I need to formulate a plan that will be in the best interest for my long term health and I will re-build my team of healthcare providers to guide my future. I have reached out to my wonderful support system of other Lyme Disease sufferers who have lifted me up and shown me love that I am so grateful for. Afterall, it will be the people who choose to walk the journey with me for the entire length of the path that will matter in the long run.
The moral of the story is…be true to yourself, educate yourself about your disease, stand behind what you think is right for your body and your treatment protocols, choose your doctors wisely, know that physicians are human beings who do their best but do not always have all the answers and most of all…be prepared to walk away at any time. You may find yourself adrift at sea at any point during the years it takes you to fight your disease but you are NEVER alone in your battle. There are many of us out here fighting right along beside you. Lean on the people who will support you no matter what happens and always keep fighting.