Episode 06: The Patient’s Role in Their Own Healthcare

The Patient's Role in Their Own Healthcare

You are so good at receiving massages!

You are the world’s foremost expert at living in your body. No one is a bigger expert on who you are and how you feel than you. Your Mission, should you choose to accept it, is to take responsibility for your own healthcare. Discover how to develop a more collaborative relationship with our providers, and provide them with the right information, so they can make the right diagnosis and help us create the right treatment plan for our specific challenges… and then follow through on what we decide we need to do.

Key Points

  • Our providers’ jobs are the easy 2%—telling us what needs to be done.
  • Our job as the patient is the really hard 98%—actually doing the things it takes to feel our best.
  • You have 100% control over how you are actively participating in a mental and emotional way, and how you are receiving what your providers have to offer.
  • Use data to give a balanced, true picture of how we are doing when we are talking with our providers. If I say “I can’t stand very long,” that is very different than: “I can only stand for 5 minutes,” or “I can only stand for an hour.”
  • You are the one living inside your body. You are the one who has to take care of it.
  • How do you go about doing that really hard 98% of following through?

Links & Resources

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You’re listening to the Fibromyalgia Podcast, Episode 6.

Welcome to the Fibromyalgia Podcast!

I’m your Coach, Tami Stackelhouse. In today’s episode, we are going to be talking about your role as a patient in your own healthcare. This is a pretty broad topic, so today I’m just going to talk about some general ideas. We’ll get into more specifics about better ways to communicate with your providers, and a few of those things, on future episodes.

[01:18] First, I want to start with a couple of stories to talk about this idea.

The other day, I was having a massage. I noticed while I was lying there that my brain was elsewhere. I was thinking about all of the things that I had to do. I was thinking about this podcast. I was thinking about people I had to contact for interviews and the artwork I had to create. Basically, even though my body was lying there on the massage table, I was working. I was in my office, in my head.

[01:51] I just stopped myself, and I thought, “Wait a minute. I’m in a massage! Let me actively participate in that massage.” Now, when I say “actively participate,” I don’t mean that I started massaging myself while she was working on my body. What I mean is that I aligned my mind, and I aligned my spirit and my energy and my emotions to the same wavelength as my massage therapist while she was working on me.

[02:25] I focused on relaxing. I focused on letting my muscles relax and letting go of tension in the areas that she was working on. I focused on calming down my body, my mind, and my spirit, and really put myself in a frame of mind of receiving, rather than the working frame of mind I was in.

[02:53] Making that little mental shift makes a big difference in the amount of benefit that you are going to get from something, like massage. I have had massage therapists tell me, “Oh my goodness, you are such a joy to work on. You are so good at receiving massages.” That might sound like an odd thing, because all you are doing is lying there. But, I think that idea of attuning your mind, your body, and your spirit to an attitude of receiving, and being open to receiving the benefits, and relaxing your body, your mind and your spirit actually makes that massage go farther.

[03:41] The other example—the other story I wanted to give you—was back when I was first starting to feel better. The doctor that I was seeing at the time… at the end of one appointment I said, “I just really want to thank you for everything that you have done to help me feel better.” I have never forgotten her reply. She said, “My job is the super easy 2% of telling you what to do. But your job is the really hard 98% of actually doing it. You are the one to thank, not me.” And I love her point there.

[04:24] To put that in another context… If you go to the dentist and have them take care of your teeth, but you never go home and actually brush your teeth, what condition do you think your teeth would be in? Yet, I think, very often, we go to a massage therapist, or we go to a doctor, and we expect to see these miraculous results. Only we are expecting them to do the work for us. It just doesn’t work that way.

[04:52] You’re the one living inside your body. You’re the one who has to take care of it. You’re the one who has to follow through on the instructions. You’re the one who has to do the physical therapy exercises. You’re the one who has to brush your teeth. So, YES, she’s right. Our jobs are the really hard 98% of actually doing the things it takes to feel our best. Our providers’ jobs are the easier 2% telling us what needs to be done.

[05:23] We will talk in another podcast episode about the best way to find a doctor—and to get a doctor that actually knows what to do in that 2% that is their job. That’s another conversation. I’m just talking about your side of things for right now.

[05:40] How do you go about doing this? How do you go about doing that really hard 98% of following through? And what is your role in your healthcare?

[05:53] Well, the simple answer is: advocating for yourself, speaking up for what your needs are, and then following through on what your doctor or provider is telling you to do. The harder answer is, of course, figuring out those things. Figuring out: What are my needs. What are my goals? What is the outcome that I want? And learning how to communicate that. As well as the hard part of figuring out the right providers that are going to tell you the right things to do that are going to help you feel better.

[06:26] So, your job as a patient isn’t just to show up and say, “Hey, fix me.” Your job is to make sure you’re finding the right providers to help you. Your job is to have some faith and some trust in those providers. Follow their instructions exactly, if you can. And, of course, speak up if there is some reason why you can’t, or some reason why you feel like following those instructions would be harmful to you.

[07:01] You are the one that lives in your body. There is nobody that is a bigger expert on who you are and how you feel than you. There is nobody else in the entire planet, in the entire universe, in the history or future of the universe, who knows what it’s like to live inside of the body that you have right now, other than you. You are the world’s foremost expert on living in your body.

[07:28] When you talk to your doctors, that is actually a place that you can speak from. Now We have to do this, of course, with grace and diplomacy, where we are speaking to our doctors from a place where we don’t want to put them down. Just like we don’t want them to put us down, right? But, we can speak from this place of: “Look, I know what it is like living in my body. I understand what you are saying, but that isn’t my experience, living in my body. This is what my experience is.”

[07:59] The other thing that we need to do is to provide good information to our providers, so that they can make the best recommendations, the best diagnosis, and help us in the best way possible. If, for any reason, we are holding back information or give incorrect information, then they are going to come to incorrect conclusions, maybe make an incorrect diagnosis, and give us incorrect instructions on how to improve.

[08:31] I’ll give you an example: Back when I was not doing very well with fibromyalgia, I discovered that I could really only leave the house about once a week, if I wanted to stay feeling as good as possible. Basically, if I didn’t want to feel worse—which my good really wasn’t all that good back then—so, if I didn’t want to feel worse… I could really only leave the house once a week.

[08:57] In talking with my doctor, instead of flat out saying it like that: “I can only leave the house once a week.” What I would do was go in, and, being the positive person that I am, I would talk about all the things I could do and not talk about the things I couldn’t do. For instance, I would walk in and say “Hey, I was able to go to Costco this week! Woohoo!” But then, my doctor wasn’t seeing the whole picture of the fact that the whole rest of the week I was stuck at home, in bed or on the couch, probably in the same pair of pajamas all week. I only got up, got dressed, and left the house once. That happened to be to go to Costco.

[09:38] She didn’t see the whole picture of the fact that it took me two days to recover from that trip to Costco. She didn’t see that whole picture because I wasn’t presenting her with the entire picture. I was presenting her with the positive side I wanted her to see. I wasn’t trying to be deceptive. It was just my nature to focus on the positive, rather than the negative.

[10:01] As participants in our own healthcare, it’s our responsibility to give our providers the full picture. This also goes the other way. If you are someone who tends to be a half empty kind of a person, you don’t want to only tell your providers the negative side and not tell them the positive side. We need to give a balanced perspective.

[10:28] Another thing that I think is important as part of this—as a way to give them this balanced, true, “big picture perspective” of how we are doing—is to use data, to use numbers, to use quantities, to use objective descriptors as much as possible. One of the ways I find a way to do this is to use tracking forms. We will link to a few in today’s show notes that you can download and use throughout your day-to-day life, so that when you see your doctor you have this information for them.

[11:04] One of them is a pain and fatigue tracking form, where you can just real simply write down what your pain level or what your fatigue level is for the day. When you go to your provider and hand them a sheet that has four months worth of you writing down your pain and your energy levels every day, and then they can see that on average you are running at about a 7 or 8. That is a lot different than walking in to your appointment and saying, “my pain level is at a 7 right now,” and them possibly thinking it’s a one-off experience. Maybe you’re in a flare, rather than really realizing, “Oh, she’s at a 7 ALL the time.”

[11:48] How we approach those two things are going to be very different from a provider perspective. If you’re in a flare, there might be certain things that we do temporarily to help bring your pain down. If that’s the pain level that you are at all the time, maybe we need to rethink your whole pain management strategy. Maybe consider other therapies, other medications, other options to help lower your pain on a day-to-day level. You can see how those two things might be different. So, again, numbers, quantities, data, tracking those things can be super, super helpful.

[12:25] The other thing I noticed when I went to the doctor and was sharing information… It was a whole different thing to say “I can’t stand very long…” Well, what does “very long” mean? If I say I can’t stand “very long” that is very different than: “I can only stand for 5 minutes”, or “I can only stand for an hour.” Depending on who you are… “not very long” if you are somebody who normally stands for a living, maybe works in a retail store where you’re on your feet all day or a waitress, and you discover you can’t stand longer than an hour. That’s a whole lot different than somebody who maybe has a secretarial job and they are normally sitting down, and when they’re standing in line at the grocery store for only 10 minutes, that’s too long. These are all things our providers need to know to treat us properly. So, again, quantify. Use numbers when possible.

[13:35] Do a little bit of troubleshooting on your own. As a patient, it’s our responsibility to provide the best possible amount of information to our providers. You can’t know every possible thing they may ask you, but there are things you can be pretty sure they’re going to ask, right? If you go somewhere and you tell them you’re in pain, they’re going to ask you things like: How long has it hurt? What kind of pain is it? Is it dull? Is it sharp? Is it a tingling, electrical kind of pain? Is it a ripping, tearing kind of pain? We need to build our pain vocabularies.

[14:15] They are also going to ask things like: What activities make it hurt more? What things make it hurt less? These are all typical, normal questions, troubleshooting, problem solving questions that your providers are going to ask you. And, knowing that, your job as a patient is to have those answers.

There may be some things, of course, that you just don’t know. You can’t go out there and try every possible activity on the planet to see what hurts and what helps. But you can make a note as you go throughout your day—and I literally do mean making a note like on a pad or in your phone—literally, writing it down, because you know fibro fog. Right? We go to the doctor and we can’t remember.

[15:03] So, literally, write this stuff down. Make a note of the things that help. Make a note of the things that hurt. If you notice any patterns, that can also be super helpful. For instance, if I notice that every time I work at the computer, I end up with a bad headache. Every time I go to this particular office or this particular store that has fluorescent lights, I end up in a flare. Whatever it is, any patterns you see, make a note of those. That will actually help your providers help you better.

[15:43] Another thing to remember is that, while your providers are experts—they did go to medical school—they also don’t know everything. I think our primary care providers, especially, they have to know a little bit about a lot of stuff. So, go in with the perspective that you are collaborating with them. Your job is to help them help you. Your job is to give them the information so that they can then use their training and their skills to come up with the right diagnosis or the right treatment plan.

[16:24] Don’t fall into the trap of telling them what you think they want to hear. For instance, if you really like your doctor, or you really like your massage therapist, or you really like your physical therapist, it can be very tempting to tell them it’s working. Or the massage was good when maybe it really caused a flare up. Or, yes, I did my physical therapy exercises when really you didn’t. Because giving that incorrect information or incomplete information is going to lead them to think that you’re responding in a certain way to treatment. They may, if they knew you weren’t [responding], make some adjustments.

[17:14] Now, I know a lot of providers, working as a coach, working as fibromyalgia patient myself, I know a lot of providers. There are many that I consider personal, close friends. That means that I get the inside, “behind the scenes” scoop from them quite often. I can tell you that there is nothing more frustrating to your doctors and providers than two things:

#1 Having the same conversation with you over and over again. For instance, if your doctor is telling you: “I need you to go gluten-free so we can see if gluten is triggering some of these symptoms.” Or, if your doctor says: “I need you to do these strengthening exercises so we can see if that helps with your muscle weakness and pain.” You really need to do those things.There’s a reason they are telling you to do that. Find the best way possible to do it—and, if there is some reason you just can’t do it, then have THAT conversation with your provider. They feel like they are banging their heads against the wall, just like you do. Right? It’s no different. So, be sure and communicate, and just be honest.

[18:33] #2 The other thing that is super frustrating for them, is when there isn’t that collaborative effort of, “I’m sharing honestly with you, in an effort to find the best solution.” I actually find it super interesting when patients really do know their bodies and can come in and say, “Hey, you know I tried that. This is what I experienced in my body. Is that okay? Is that not okay?”

[19:06] I’ll give you an example. With my new chiropractor, after moving to Seattle from Portland, they gave me some special neck stretches to do. I have this little foam pillow thingy I lay on to try and get the curve back into my neck. As I lay on that pillow, there are a lot of different things that I have experienced. I have experienced some, sort of, tingling, warm tingling feelings in my neck, a little bit burning. I have experienced some things where I am laying on it [low on my neck] but I’m experiencing some pain up [higher on my neck]. I have experienced some nausea. I’ve experienced some headaches. I have experienced some general agitation: “I don’t want to lay here anymore on this thing.” Communicating all of those different things with my chiropractor helps her know how to help me.

[20:08] She can tell me, “Oh, it sounds like you need to stay at that number of minutes. We don’t want you to be on there any longer, until that feeling goes away.” Or, “That feeling is totally normal, because we really are changing how the body structure is set. We are getting that curve back in your neck. A little bit of being uncomfortable is totally normal, and that’s actually what we want.”

She might say, “Oh, that sounds like we’ve got something we’ve got to fix in your neck, if your feeling that sharp pain up there. We need to take a look and correct that.” Or she might say, “Oh, everything feels totally fine? You’re not experiencing anything negative? That means we need to bump up how many minutes you’re laying on it.”

[20:52] The more communication I give her, the better she can help me. I know I’ve said that about five times in this podcast but it’s because it really is true. The more information you give them, the better they can help you, and the better results that you get. That is a huge part of your job as a patient, in your healthcare, is being the voice for your body and communicating with your providers.

[21:19] I also want to talk just a little bit about the placebo effect. It has a negative connotation, right? We usually see it when we are talking about testing a particular treatment or testing a particular medication. They’ll do a double-blind study, where neither group knows whether they’re getting the actual medication or sugar pill… and noticing that the people who took the sugar pill actually got better, too. That’s the placebo effect.

[21:51] But let me put it to you in a different way: The placebo effect is the effects that you get when you believe something will work and therefore it works. There is nothing wrong with that. If I really believed that taking a sugar pill would help me feel better, and it did, what would be wrong with taking that? Nothing, in my opinion. It’s also showing the power that our minds have over how our body feels.

[22:23] There is so much power in your mind. Please, do not think that I’m saying fibromyalgia is all in your mind, or that we can control our pain with our mind. But I am saying there is probably more that you can accomplish with your minds and with your thinking, than you think you can. There is a lot there. Your job is to trust and believe, and just go in with an attitude of “Let’s try and see.” In many cases, what’s the harm?

[22:59] One of the questions that I got from a reader, someone on my Facebook page recently, was: “How do we know if taking medication is worth it or not? Are the side effects worth it? Should you medicate or should you not?” That is a great question that I will be answering in a future episode. But, for now, aside from that question, if your doctor wants you to try something—unless you have a real reason not to, in which case you should discuss that with reason with them—you should probably try it.

[23:41] This idea of trying things and seeing whether or not they work is actually part of the diagnostic process.

Back when I used to manage the tech support department for a software company, there were many times I would be talking with someone who was having an issue with their software, and we would have to try something to see what happens. I couldn’t just cut open her software and see what was wrong. Just like with the human body, that’s not the first step, right? So we try things to see what the response is to help us know what direction to go next.

[24:22] Sometimes when your doctor says, “I want you to try this”, that is actually part of the diagnostic procedure. That is actually part of how they are going to figure out what the problem is and how we can fix it. If they ask you to go gluten-free and you don’t, then we don’t know if that is an issue or not. You don’t know if that could have helped you.

[24:47] Again, if there’s a reason—a very strong reason—why you don’t want to do something, that is the conversation that you need to have. For instance, if somebody prescribes a particular medication, you read the side effects, and you have some real concerns, that is absolutely something to talk to your doctor about.

[25:05] Another reason to follow through on what your doctor is suggesting that you do, is that in many countries—and here in the U.S. with many insurance programs—there is something called “fail first” or “step therapy”. What that means is: in order for the insurance company to approve, perhaps, a more expensive procedure, they have to show that other less expensive things did not work for you.

[25:40] I’ll use my migraines as an example. Having BOTOX injections for your migraines is a very expensive procedure. Even with insurance, it costs me close to $2,000 at the beginning of the year when I haven’t met my deductible. The end of the year it’s more manageable. It’s more like $300 or $400, but it’s still expensive. Before the insurance company wants to cover all of that, they want to make sure that we won’t don’t go straight to that [treatment option]. It’s also a little bit more risky, right? You are literally injecting a neurotoxin into your head. So, there are some risks there.

[26:21] Same thing if maybe you were going to have some type of surgery. There might be things they want to try first because of the risks and the cost involved in that particular surgery. If you don’t try the earlier things, the less expensive things, they may not cover the more expensive ones.

[26:39] It’s also important that you keep all of your records on these things. I was just talking with a client a couple of weeks ago who said that her insurance told her she wasn’t approved for this particular therapy because she hadn’t tried other things first. She had all of her records and was able to say, “Hmm, no. Yes, I did. In fact you paid for them. Here are the records. I would like this covered.”

[27:05] As the patient, as the advocate for yourself in your own healthcare:

#1 — You want to make sure you try those things as a way of eliminating what may or may not work.

#2 — Keep track of it, because, as much as we would love to say that our healthcare system is keeping track of all of this for us, the reality is they aren’t always. You may change insurance companies. You may change doctors through no fault of your own. In my case, my husband’s company switched the people they were getting healthcare through. So we couldn’t stay with the same plan. We had to switch. I’ve had situations where I got a letter out of the blue that my doctor left the practice, and I have to find another one. There are lots of things that could come up.

[28:03] You have to be the one that is responsible for your care. Meaning that you are keeping your own medical records. You are keeping a file. That’s a whole other thing we’ll talk about some day: keeping a file of your own medical records and really having all of that information.

You are the only person who can be 100% responsible for that. You are the only person that is with you all the time. Make sure that you are keeping your records, making notes of these things, and that you are following through with your very best effort on the things your providers are recommending that you do.

[28:49] Sometimes, what is challenging about this, is figuring out how to take what they are telling you to do and integrate it into your daily life. This is something where, I personally found, working with a coach was the thing that made the difference for me.

[29:07] My doctor had been telling me for quite a while a few things to change in my diet, and I just was having a difficult time figuring out how to do it. It was all about going gluten-free—figuring out how to eat in the same house as other people, when I’m gluten-free and they’re not. Just how to do it, right?

[29:32] Working with a coach was so helpful for me because we could have those conversations of: Okay, there’s this family get together we are going to over the weekend. How do I make sure there is something there that I can eat? How do I avoid the birthday cake when it’s my birthday and I’m supposed to be gluten-free? Talking through all of these things. How do I go out to eat at a restaurant if I need to be gluten-free?

I am just using this as an example, of course, but it applies to all kinds of things.

[30:03] It could be things like: I’m supposed to do these physical therapy exercises, but I always forget until I show up at my appointment. They ask me if I’ve done them and I’m like, “Noooooo….” Talking through this with someone, strategizing with someone, can be hugely helpful to actually implementing the things your providers are telling you to do.

[30:28] Of course, I’m using the example of a coach, because it was the thing that helped me the most, but it could be a family member. It could be a friend. Somebody who has good problem solving skills. Someone who can see things from a slightly different perspective and maybe come up with some solutions that you wouldn’t have thought of because you’re lost in the middle of the forest and you need somebody who can see the bigger picture. I think it’s really hard for us to see our own stuff. Sometimes it can be helpful to have someone looking from an outside perspective to help us with that.

[31:02] Your action steps for this episode… Your Mission, should you choose to accept it… is to take responsibility for your own healthcare. Be the person who is keeping track of your medical records. Be the person who is doing that troubleshooting before you go to the doctor appointment.

[31:26] Write down what you’re experiencing: your pain, your energy levels, when things get worse, when things get better, what your averages are, how many bad days you have a month. Is a bad day for you an 8 or 9; or is a bad day for you a 4? We are all different.

[31:46] Start thinking in terms of numbers and quantities and making a note of them, so when you do see your provider you have that information. I usually have a note on my phone, that between appointments, I’ll just make a note on there for the things that have come up, so that I’ve got a record. Because if my next appointment isn’t for another two months, it’s super easy to forget.

[32:11] The other thing I want you to do, is try to actively participate from an emotional, energetic, thought perspective. Like that story I was telling you about with my massage. When you go into something like that, whether it’s a doctor’s appointment, a massage appointment, physical therapy, chiropractor, whatever it is, go into that with an attitude of receiving.

[32:42] What information are they giving you? What treatment are they giving you? What benefit are they giving you that you can be open to receiving and mentally, emotionally participate in—and choose to believe? Let the placebo effect work for you in a positive way—in a good way—and see an additional benefit just from looking towards a positive outcome.

[33:11] The other I want you to do, is really start thinking about:  What do you want? What is the outcome that you want? What are your key concerns? And trying to communicate those even more clearly. Your job is to provide the information about you, the information about the symptoms you are experiencing, the information about how your illness is impacting your life.

[33:41] Then, be open to receiving what your provider is giving you in return, in terms of what they think that your treatment options need to be. Start seeing your provider appointments as collaborative instead of you showing up, sort of at their mercy, and waiting for them to fix you. You want to go in as a participant and as a collaborator instead.

[34:08] Now, we will talk in another episode about how to have some of those conversations with your providers. We’re going to talk about how to build your dream team of providers so that you have a team that can help you in the way you need help. Those will happen in future episodes. But, for now, I want you to focus in on your side of the equation and looking at the things you have total control over. Which is:

  • The information you provide
  • The information you keep track of
  • And how you are actively participating in a mental and emotional way, and receiving what they have to offer.

[34:45] That’s it for this episode of the Fibromyalgia Podcast. I hope that you will join us next week, as we talk a little bit about the research that has been done on coaching and it’s benefits. This is going to be a little bit more generic than just fibromyalgia, but I think that the things they have discovered in terms of how coaching can help also apply to us.

[35:13] We will have Dr. James Fricton here on the podcast for that. I look forward to interviewing him. He’s doing some really fun things: doing research on coaching and putting together coaching programs, and some things like that. I hope you join us for that.

[35:33] Then, in Episode 8, we are going to get specific about Fibromyalgia Coaching, talking a little bit more about what that is and how that potentially can help you.

[35:45] We are super close to Episode 10, which is our Ask The Coach episode. So if there are questions that you have, things that we haven’t covered yet, insights that you would like to get from me, please reach out through FibromyagiaPodcast.com and send me your questions so I can include them in our first Ask the Coach episode in just a few weeks.

I thank you for joining me and look forward to talking with you next week.

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