VIDEO TRANSCRIPT

Hello YouTubers! How are you doing, how are you feeling this week? Let me know in the comments, and please give me a thumbs up and hit subscribe while you’re there, it really helps to support my channel.

This week I am talking about a survival skill for Lyme patients, how to become your own health advocate. This is so, so important because a lot of doctors are unaware of Lyme disease, unaware of the complexities around this illness.

I've experienced this and seen this quite often in the Lyme community of just being completely gaslit and made to believe that our symptoms are no big deal. This happens especially for women, I know my own experience, my entire life I've kind of been made to feel that my injuries or illnesses or symptoms whatever I was experiencing was no big deal… that I was overreacting, I was being hysterical.

You know, rub some dirt on it walk it off, that's the kind of mentality I was raised with. So, when I developed Lyme disease I really pushed myself right through all the early symptoms thinking it was no big deal. And just pushed myself right into the emergency room and into being bedridden for two straight years.

I think this happens a lot to women because we are just made to feel as though our symptoms are no big deal our struggles are no big deal. We're overreacting, we should get a hobby, we should try some antidepressants, we should lose some weight, we should gain some weight, whatever it is, your doctors are just kind of making you feel like it's not a big deal. Then when something big is happening, you just kind of write it off as though oh ok I’m being hysterical because that's what you've been told for 38 years.

So I wanted to share a few tips and information with you this week. This is something I'm still working on so it's helpful for me to even just talk about, and I'd love to hear your experiences as well if you feel called please share in the comments.

This is going to be just a few tips and tools so I'm going to share some things to do before the appointment, during the appointment, and after the appointment to really help you make the most of these doctor's appointments and stand up for the best care possible.

Before Your Appointment

Before your appointment I highly recommend doing some research around your doctor if you've got a brand new doctor before you even make the appointment, go ahead and do some research, if you're in a local Lyme support group you can ask around in there and see if anyone has any first hand experience with that doctor.

You can do a Google search and just kind of research, where did this doctor go to school, where have they practiced. I found that doctors coming from more lying prevalent areas are a little bit more open and curious about Lyme disease. So I lean towards those types of doctors.

You're going to want to write out a list of your top concerns, your symptoms and any questions that you have for this doctor, and make sure that you take that piece of paper with you and look at it during the appointment.

I also recommend doing a little visualization before the appointment, just imagining how this appointment could go and really just getting intentional about what you want out of this appointment.

During Your Appointment

During the appointment, I recommend looking at that piece of paper you wrote with your top concerns and symptoms and keeping your doctor focused on that. Sometimes they might bring up other issues, your weight, for example, depression, whatever it is… so just like saying, oh I appreciate you bringing that up and I’m happy to make another appointment to discuss that, but today I'd like to focus on X, Y and Z and just really staying focused on those top concerns that you have.

You're going to want to avoid diagnosing yourself, so don't go in there and say I have depression, say, these are my symptoms, what do you think? Letting them take the reins or feel like they have the reins of this appointment because they need to feel like the expert in the room, and you're there to see what they think, so just framing any questions around that, what do you think Doc?

You're gonna want to be ready to educate your doctor, and sometimes doctors have a little bit of defensive mechanisms against patients who are well informed. So, just being very focused on why you're concerned. So, you know saying something like, I had late-stage Lyme disease and was treated, but I am still not 100% better. I'm concerned because I have read XYZ, what do you think?

If you're struggling with memory issues like me, I highly recommend recording your appointment or taking notes during your appointment so I usually just use the voice app on my phone and say, you know, before the appointment begins I just say hey, do you mind if I record this for personal use, and I never had a doctor tell me no.

After Your Appointment

After your appointment, you're definitely going to want to ask for a copy of any notes or test results that they have. I highly recommend just maintaining your own health records.

You're also going to want to take some time to reflect after your appointment I highly recommend just journaling. I like to journal the day of the appointment literally like right after the appointment I will journal it out, ask myself Hey, did I feel heard and respected, were my top concerns addressed, how did I feel about this doctor? And then I revisit those questions in a few days as well after it's kind of digested in my mind.

Be willing to hire and fire at well you know these doctors are working for you, you should feel as though you're a team, and that they are open to hearing your concerns and questions and being very receptive to what you want to do with your own body.

Whoops, I almost forgot to mention something very important so this is called defensive medicine, also known as defensive medical decision making.

This is important to know about because doctors can actually recommend testing or treatments that aren't necessarily the best option for the patient but are more leaned towards protecting them from being sued. So be aware of that.

After I got my late-stage Lyme disease diagnosis I still had many doctors wanting to test me, poke me, and prod me for all kinds of other syndromes that had no root cause.

So, after going through the wringer I have a list of questions I always ask, and I always do a lot of research around whatever these doctors are telling me, whatever treatment or testing, they're offering. I always do my own independent research. So I recommend before agreeing to any invasive testing or treatments, you're going to want to ask, what is this testing going to show? How accurate is this test? Is there a less invasive alternative? And is there a treatment for it if you do find whatever you're looking for… is there a treatment for it, and what is that treatment?

I had a doctor once wanting to do a small nerve biopsy and there's no treatment for it if I did have it, so I was like well that sounds painful and unnecessary so I'm going to say no.

Also, could your symptoms be explained by another illness something that you've already been diagnosed with, like Lyme disease? Do you really need the test? Asking these questions getting really curious, do your independent research because, you know, this is your body and it's your right to refuse any testing or treatment that you don't want.

So those are my top tips for being your own health advocate, I like to kind of think of my symptoms and my body when I'm going into the doctor, I kind of think of, like, I'm standing up for this toddler like my body can't speak out for itself. So I have to do the best that I can to speak out on its behalf. I kind of just think of it as like the little toddler that I'm taking care of… so what would mama do? If she were in the, in the doctor's office and the doctor wasn't taking her seriously?

So just stand up for your rights, we really, really need this as Lyme patients, even our Lyme literate physicians, aren't the best. You know that this illness is very controversial and it impacts everybody differently. So you are the expert in your own body and always listen to your own gut.

If you're looking for a Lyme literate doctor I have a video I'll link above with my tips on how to find one and how to work with one.

I also have everything I wish I had known at the beginning of my healing journey in my new book, The Lyme Ease Survival Guidebook. It is available on Amazon, I'll link it below can learn more on my website.

I have many free resources available there as well, to help you take control of your treatments and kick Lyme butt! So go ahead and check those out. Let me know in the comments, I'd love to hear your experiences or tips on being your own health advocate, and please hit the thumbs up and subscribe if you enjoyed this video I will be back next week with another video until then keep healing!