If you've been diagnosed with Lichen Sclerosus, a chronic illness, or are misdiagnosed or undiagnosed, then you know how important it is to advocate for yourself in the healthcare system. In this blog post, I'll outline the steps I take in each stage of any medical appointment to be a better self advocate. Whether you're seeing a doctor, specialist, or clinician, these tips help you get the quality care you deserve.
Having the right mindset helps us be better self advocates
For people with Lichen Sclerosus, the best way to get the most from each doctor's visit is to be our own advocate. Many of us are rushed through an exam, talked over, given little information, and escorted out the door before we even have a chance to get comfortable on the table.
The first thing we must do to become better self advocates, is change our mindset. We deserve to get spectacular service. We're paying for it!
Instead of going into the doctor's office with the mentality of, okay, I'm going to go in here, tell them what my symptoms are, and they're going to tell me what's wrong with me and how to fix it…think about it as I'm going to go to the doctor, tell them my symptoms, they're going to give me feedback. We're going to partner in how to treat me and get me onto the road to recovery because it has to be a partnership.
Kathy Ruiz-Carter
Lichen Sclerosus Podcast Host
Don't be intimidated by this person. They work for you. Think of your plumber, your handyperson, the person who mows your lawn, or your dry cleaner. You pay these people to do a service for you. The doctor is no different.
We have to hold them accountable. As such, instead of going into the doctor's office with the mentality of, “Okay. I'm going to go in here, tell them what my symptoms are, and they will tell me what's wrong with me and how to fix it.” Think about it as “I'm going to go to the doctor and tell them my symptoms. They're going to give me feedback, and we're going to partner in how to treat me and get me onto the road to recovery. Because it has to be a partnership.”
You have a role to play. They have a role to play. Together, you're going to get better.
It is important we are proactive and assertive in our own care. This can be scary at first. Breaking it down into easy-to-follow steps helps me from getting anxious and overwhelmed.
The Three Stages to Being a Better Self Advocate:
Before the visit
Be clear about what the visit is for
The first step to becoming a better self advocate is identifying what your visit is for. This means being clear about what symptoms you are experiencing and why you believe you need to see a healthcare professional. Once you know what your visit is for, you can then begin researching which type of doctor or healthcare specialist is best suited to help you.
If you are unclear about what your visit is for, it is perfectly acceptable to ask for clarification from your healthcare professional. They should be able to help you identify the reason for your visit and the best course of treatment. If they cannot help you, ask for a referral to someone who can.
Remember you are the advocate for your own health, and it is important that you feel comfortable and confident in the decisions you make about your care.
If you feel nervous or anxious about your upcoming healthcare visit, that is completely normal. Many people feel this way when faced with the unknown. However, by doing your research and being prepared ahead of time, you can help ease some of your anxiety.
Trust your instincts and remember that you are the expert on your own body. You know better than anyone else what is going on, so don't be afraid to speak up and ask questions.
Find the right doctor
Now that you've considered your symptoms and why you need to see a doctor, it's time to research which type of doctor can best meet those needs. Typically gynecologists, dermatologists, and vulvar specialists diagnose and treat Lichen Sclerosus.
If you can't find a knowledgeable one in your area, it may be helpful to look up Women's or Vulvar Health Clinics. Women's Cancer clinics should also be familiar with LS. Be sure to check our referral-based provider directory to see if there is a medical provider in your area.
Once you have a few potential doctors in mind, you can read online reviews and speak to friends or family members who have seen those doctors to get a sense of their bedside manner and whether they are likely to be a good fit for you.
You could also call the office and ask questions. Ask about their experience dealing with your concern. What does an initial visit look like? How much time is each appointment allotted?
Prepare for the visit
Once you have chosen a doctor, it is important to be prepared for your appointment by tracking your symptoms and having a list of questions ready to ask.
You can use our digital symptom tracker, download our printable PDF, or create your own log. When tracking, be sure to track all symptoms, not just the ones you think are related. You'd be surprised which symptoms are connected to each other. For example, did you know jaw pain and TMJ can be related to tightened pelvic floor muscles? Yeah, so track everything!
Some things you may want to track
How to be your own advocacy superhero
In this video, Dr. Jen Morgan explains how to open lines of communication with your medical team & insurance company, decrease barriers to care, and eliminate fear to empower your decision-making today.
Lists are a self advocate's best friend
You want to have a list of questions along with your symptom tracker. These are questions you have before your visit. Part of becoming a better self advocate is asking questions and getting all the information we need to make informed decisions. A lot of the time sitting in the doctor's office is intimidating. We're trying to listen to them and answer their questions, and we may forget something we wanted to ask.
If you have it written down on a piece of paper or on your phone where you can present it to the doctor, it shows them you are prepared and that you are proactive in your care.
Another thing to remember when preparing for your doctor's visit is to bring along a list of medications you are currently taking. This includes over-the-counter drugs, vitamins, and supplements. Your doctor needs to know everything you are putting into your body in case of any interactions or side effects.
Also, if you are seeing a specialist, bring along your medical records so they can be up to date on your history.
We all need an ally
The last thing you want to consider before your visit is if you want to bring an ally with you. An ally is someone who knows what's going on with you, who can speak to your symptoms, who can speak to what your illness has been like, and someone that you trust. Someone who will ask questions in case you missed something or think of something you didn't while the doctor's talking.
Your ally can be a spouse, a parent, a sibling, a friend, or anybody who will be another part of your team.
It's almost time to go to the doctor. The most important thing for me when going to the doctor is staying calm, cool, and collected. As I said before, going to the doctor can be intimidating, especially when seeing a doctor for the first time. You don't know their temperament or bedside manner.
If you've been dealing with this issue for a long time and doctors have given you the run-around, you may feel anxious or angry about having to see another one. Worried and intrusive thoughts like, “Are they about to give me another misdiagnosis?,” or “Are they going to be able to find out what's wrong with me?” may fill your head and not allow you to think clearly.
All these thoughts can cloud your ability to be a better self advocate. That's why you must do the work before your visit.
During the visit
Arrive Early
The first thing you want to do during your visit is arrive early. This will set you up for success. You'll have time to fill out all the paperwork without rushing. You can sit for a few minutes, gather yourself, calm your breath, and mentally review what you prepared. Get clear on what you want from the visit, get ready to meet the doctor, and advocate for yourself.
Stay Focused
The second thing you want to do is focus. You want to concentrate and stay calm. When talking to the doctor, focus on the main reason you're there. Try not to get scattered and start talking about other issues. You should have your symptom tracker and list of questions to guide the visit.
A lot of doctors are on a tight timetable. If you're lucky, you will get ten to 15 minutes with the doctor, but chances are their next visit is already waiting for them. They're trying to get done with you so they can get to the next one, and the next one, and the next one, so they can get out of the office on time.
Be brief with your information, so they get what they need, give you what you need, and get you out of there. The last thing you want to do is not have enough time to ask questions.
Ask Questions
If you don't understand something, if you are not sure about when you should follow up, how often to take your medication, or what the maintenance plan is, whatever it is, ask questions. An important part of becoming a better self advocate is asking questions.
You must ask as many questions as possible during the visit. Let's keep it real. You won't want to call or email the doctor when you get home. You're going to try to wing it and say, oh, I think this is what it was, or you're going to go on Google and try to find the answer.
The time to ask the questions is when the medical professional is right there in your face. And if your doctor has an issue answering your questions, find a new doctor.
After the visit
Once you're done with your visit, you've got your follow-up instructions and next appointment. You've scheduled any test the doctor ordered. You know exactly what you're doing, leave the office and head to your car.
Celebrate
Come on. You did it! 🎉🙌🏽🙌🏽🙌🏽🎉
You advocated for yourself. You came prepared and killed it!
Your doctor is now your partner. You are now a part of your treatment.
You go because you did that thing!
Celebrate yourself. It doesn't matter if you didn't do all the steps. If you did one of the steps, you moved closer to being a better self advocate. Celebrate it. It's a process. You may not be able to do all these things at once, but you now have a starting point.
All you can do is grow and feel that empowerment. You are taking control of your health. How awesome is that?
I can tell you from personal experience it feels amazing to stand in your power. To have agency in your own body, it's awesome.
Evaluate
After you celebrate, evaluate. Be completely, brutally honest.
All of these things. Evaluate them. Decide, is this the person you want to be your partner in your health journey?
Because if it's not, you can always find another one. There are so many doctors out there. Unfortunately, they're not all good.
Evaluate and be honest. Do not downplay a bad doctor. You'll do yourself a disservice downplaying a bad doctor. On the flip side, if you have a doctor who's been good to you and you felt heard in the past, and this time it was not a good visit, they were rushing you, they were short with you. Give them one more chance.
Doctors are human too. They have bad days. We don't know what's going on in their lives. We don't know all the circumstances. Don't throw them away if they've been good to you before. Give them another chance and then evaluate from there.
Follow Through
Last but super important is follow through. Do everything you and your doctor have planned for your treatment, whether that's getting a referral to another doctor or specialist, a certain medication, blood work, follow-up test, whatever it is, make sure you do it. Because if you're not doing your part in this partnership, the doctor can't do theirs.
If you're not going to these appointments or getting these tests done, then the doctor cannot get the answers you need, so you guys can create your future treatment plan and get you healthy.
Conclusion
Self advocacy is key when navigating the healthcare system. By being clear about your symptoms, communicating openly with your healthcare providers, and being proactive in your care, you can ensure that you get the quality care you deserve.
I'd love to hear your thoughts about this three-step three-stage plan to get quality healthcare.
Leave a comment on how you'll be a better self advocate, or drop any questions you want me to answer. Better yet, join our next virtual meetup and tell me in person!
How to be your own advocacy superhero
In this video, Dr. Jen Morgan explains how to open lines of communication with your medical team & insurance company, decrease barriers to care, and eliminate fear to empower your decision-making today.
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