Updated: Mar 31, 2022
In honor of the upcoming National Doctor's Day I thought it would be appropriate to write about doctor visits! Those of us lucky enough to be blessed with chronic illness have likely had our differences with a handful of doctors, I know that I have! With Lyme disease being highly controversial and super misunderstood I recognize how quickly doctor-patient relationships can turn sour. I wanted to give you some tips and tricks I have learned along the way.
What is helpful?
I cannot stress enough how important it is to find a provider you can trust. Don't ever settle for anything less than you deserve. I think too often we go to the doctor and we have it in our own minds that we are annoying because we have this laundry list of symptoms. Remember that we didn't ask to be sick and they are there to help.
I know that you're probably thinking: "Easier said than done," I've been there, we all have. You have countless medical appointments; some are good, some are bad, and some are okay. I promise you there are providers out there who do care, find one.
Find a provider who not only cares about you as a person, but who is willing to let you participate in your care. Some may think this is crazy and unreasonable because we go to the doctor seeking their expertise, but don't lose your voice. Stay active in your treatment plan and communicate your needs and wants to your provider, you will find that you can come to a common ground more than you think.
I think it is important to remember that physicians get burnt out too, just like us they are human. Try to remember this when you think that your provider is short with you, acting annoyed, or otherwise; it could be that they have had a bad day and the twenty-five patients they saw before you all presented with multiple complaints or maybe they just diagnosed a patient with a terminal illness. I am in no way implying that we should be treated poorly or that it is okay for provider's to dismiss patients. What I am saying is don't lose a good provider because they are having a rough day, show some grace and be patient with them- Lord knows they need patience to be a part of our team.
I have found it is all in your approach:
We must not forget that we didn't become this ill overnight, therefore unloading on your provider all that you have been through the last ten years or so does neither of you any good.
Again, for clarity, I am not stating that you should minimize your symptoms or leave anything out, what I am saying is maximize the time you do have with your provider and focus on the most pressing issue knowing that you will be on this journey toward healing with them for a long period of time.
How many of you have done this? You meet with a new provider and you want to tell them every single detail of what you have been through? So you start thinking back and recall bits and pieces and before you know it forty minutes have passed and you're still talking about things you felt ten years ago when you first started feeling sick! Also, I don't know about you, but when start telling my story from the beginning, very rarely does it ever make sense because it's SO much! I will start recalling a symptom and that will lead me to an entirely different thought, followed by the next random symptom which leads me somewhere else.... before I know it we are pressed for time and my brain fog driven account of what my illness has been was nothing short of confusing. We have all done this! The provider is starting to wrap-up the appointment and there I was still talking about things that I went through several years ago that aren't necessarily relevant at this time. It is necessary to give background and I understand this so I strongly suggest sitting down and writing out your story. (CLICK LINK TO USE MY OUTLINE) Write your symptoms, write about the last time you felt good, write about how your life has changed since you've been sick. Write everything you can remember: testing, financial difficulties, relationships and friendships that have been lost or gained due to your health condition, bad medical care, misdiagnosis, good medical care, treatments, anything you can think of write it down and then organize it. The best way to do this is by creating an outline so you can easily reference key points in your story. An outline will help you streamline your journey and will allow yourself as well as others to view your journey more clearly. Be concise.
Documentation is key:
It is important to document all of your symptoms so keep your outline close and update as needed. This will help your provider to document accurately as well.
Be patient & work together:
Be patient with your provider and be active in your treatment plan! The right provider will respect and appreciate your feedback so don't be afraid to ask questions and make suggestions, they will guide you in the right direction.
Take matters into your own hands:
There are so many things that you can do at home to be proactive when it comes to your healthcare. Take a look at your diet, exercise, and environment.
Do WHAT you can, WHEN you can.
* Eliminate gluten, dairy, sugar the best you can
* Make small modifications to your diet when you can: i.e: organic fruits & veggies, organic, grass fed meats, cut out processed food
* Get up and take a walk, do ten jumping jacks, stretch, do yoga, march in place, walk up and down the stairs a couple of times, whatever you can do, do it, start small, and keep your body moving.
* Cut off toxic people/relationships these things take up energy you don't have and will keep you sick.
* Start your day with positive affirmations: SAY them, FEEL, them, BELIEVE them.
* UNPLUG: Do not be a slave to social media or your cell phone. Take the time you need to take care of you, you don't have to get back to people instantly!
What's not helpful:
* Being impatient
* Being unreasonable
* Being difficult/rude/condescending
We often forget that doctor's do not know what they do not know and there are so many unknowns with Lyme and chronic illness. Not only are the symptoms all over the place and difficult to make sense of, the current testing for Lyme is unreliable thus making diagnosis and treatment more complicated.
As I stated earlier, I have been there plenty of times with doctors who just don't get it, don't care, or don't know and don't care to know. I know how incredibly frustrating it is to be brushed off by a specialist you waited months to see. I know how it feels to be dismissed by a doctor, I know how it feels to have doctors sit there thinking; there's just no way all of this is actually happening, she must be crazy, it's all in her head, she's making it up, she looks fine, she's too young to be sick....... I have heard and seen it all. I want you to know that the sad reality is these things do happen and probably always will happen, so don't take it on; keep going and know that you will find a provider who is a good fit for you.
Be patient with your provider and listen to each other. Remember that this is a marathon, not a sprint. Take it one day at a time and don't expect your doctor to heal you or hear all of your complaints at a single appointment. I promise you will get there in time.
I have been very fortunate to have an amazing PCP who is kind, considerate, caring, and open-minded. She has been open to trying new things and open to taking breaks when I feel my body needs rest. She never pushes me in one direction or the other and we both know that we are learning as we go. I never project onto her because I know how incredibly complicated chronic illness and Lyme are to treat so I don't hold her to an unreasonable standard and expect her to magically heal me just because she is a physician. I realize my body is malfunctioning and her and I must work together to manage what is happening the best we can. I know that in general symptoms are similar across the board for Lyme disease and chronic illness patients but I recognize that there are many variables so it's a process, find what works for you and share your story with others! I believe that because our journeys are so different that we must share our experiences so we can help others.
If you would like to share your Lyme journey, click the HERE to get my free outline!
I am happy to share your story on my page once you have completed it just email it back to me at: email@example.com
The information shared on this page is for informational purposes only, it is opinion and should not be taken as medical advice. Always consult your medical provider for medical advice and before starting any new treatment.