When walking the path to diagnosing an illness or chronic condition, it can mean visitng multiple doctors. It involves missing lots of work and going through diagnostic procedures that are invasive and sometimes painful. The one part about this process that is overlooked is the affect it can have on an individual’s mental health. Some of these procedures, although necessary, can be traumatizing. There are sometimes when doctors can be detached and look at you more as a case study than as a person.
I have had a chronic, undiagnosed condition for the past 20 years. I have seen multiple specialists and undergone a plethora of tests. The issue I tend to run into is that doctors begin to lose hope of finding out what is wrong. There are things that happen to the body that can not be easily explained as it may be something that medicine has not quite caught up to, or it could be something that is simply a mixture of various things in the body that doesn’t have a certain diagnosis.
Each time I visit a doctor, I go through an emotional process. I tell myself not to cry before each visit because I have such a fear that they will tell me they don’t know what’s wrong with me. Being undiagnosed can result in multiple issues. If the undiagnosed condition progresses, then it becomes difficult to get assistance from disability services.
Over the past twenty years, I have had times where I am motivated to go to specialists to see if any of the newer tests can find anything. Then there are times when I don’t want to deal with the financial burden, emotional stress, and immense amount of time that has to be devoted to the process.
Recently I have found my motivation again to find a diagnosis. I have been undergoing biopsies and invasive procedures in order to help in the process. I have upheld my half of the bargain by providing the money for these procedures and showing up to my appointments with a positive attitude. I am no longer willing to hear the words, “I don’t know what’s wrong with you.”
I recently got a new primary care doctor, as my insurance improved. I saw her two times. She sent me to one specialist. On that second visit with her, she told me she doesn’t know what’s wrong with me, and I should probably consider counseling. So, not only had she dismissed me as a patient by seeing me only one time before, not doing any tests on me, and sending me to a specialist who had not even gotten his test results back yet—she also insulted me by implying that counseling would help to improve my physical condition.
I am not knocking counseling. I definitely believe that counseling is important for people. Had my primary care doctor looked at my chart, she would have known I already am in counseling and love it. So the question becomes—is she saying this is in my head? Because I’m not okay with that. Is she implying that I should seek counseling to simply live with an undiagnosed condition for the rest of my life? I’m not okay with that either. I am not willing to give up and I refuse to work with a doctor that gives up so easily. So that brings me to the first suggestion in getting the care that you deserve.
1) Advocate for Yourself
It is unlikely that anyone is going to be as motivated to find a solution than the patient who has to live with it daily. When you go to a doctor for long-term care, you are entering into a partnership. The burden is then placed half on you and half on them. You bring the finances, time, transparency, and suggestions. They have the available resources and medical knowledge.
Doctors want to hear what your concerns and suggestions are. They want to understand the full picture of your daily life. If you have a doctor that doesn’t want to listen to you, then you should consider seeing another doctor that will. When you make appointments, make sure to let the receptionist know the amount of time you are requesting with the doctor. If they schedule you for a 20-minute session with the doctor, then they will give you the opportunity to discuss one or two symptoms only. This is one of the most important parts of getting the attention necessary from the doctor. A 20-minute session is simply not enough for someone with such a complicated case.
The second suggestion is definitely an important one. It applies to those that are undiagnosed, as well as diagnosed.
2) Understand Your Condition
Doctors tend to have a niche that they specialize in, so their scope of learning can be limited in other areas. Primary care doctors have to be competent in all areas in general ways, they are not specialists. This means that doctors do not know everything. You should keep up on new studies and blood tests. If you think that you have symptoms that seem neurological, contact your doctors and tell them you want to see a neurologist. A doctor is never going to deny your request to see a certain specialist. When you go to that specialist, tell them exactly what tests you want done. Do not let that specialist do one test and tell you they don’t know what’s wrong with you.If they suggest otherwise, then ask that they give you a thorough explanation so you can decide whether it is necessary or not.
3) Study Your Symptoms
This one seems pretty obvious. You go to a doctor and tell them your symptoms. It is much more complicated than that. Before you go to any primary care doctor or specialist, write down your symptoms. Make sure to put information of when they began, the frequency at which they occur, the severity of it, and any other paired symptoms you see happen at the same time. I have gone to doctors with diagrams before, mapping out the twenty years of symptoms. Sometimes the doctor will gloss over the paper or not look at it. Insist that they take at least a moment to go over what is on there.
Doctors are people, just like any of us. They went to school for a very long time to study this and I don’t doubt their ability to reach a diagnosis for anyone. The fact is that they have seen multiple people come through their office that have the same type of symptoms and they were not able to reach a diagnosis. They typically already have an idea of “what is going on” before they even walk into the room with you. They are given a brief explanation from the nurse about symptoms and past treatments. They walk into the room, ask some questions to help clarify, and decide whether you require further testing from them or not. At times they will simply do the tests because they don’t want to be liable for overlooking something.
I believe that there are wonderful, caring doctors out there. After seeing dozens of them myself, I have seen anything from completely insensitive, dismissive doctors to kind, understanding ones. Like any other population of people, they vary in personality and passion. It is this variation that makes it so important to advocate for yourself.
When you go to a doctor for long-term care, you are entering into a partnership. The burden is then placed half on you and half on them. You bring the finances, time, transparency, and suggestions. They have the available resources and medical knowledge.
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