The First Step

I know how hard it can be to get that FIRST opinion when you’re not feeling well. Perhaps you’re finally willing to accept that something is wrong and you need help. Or, maybe you’re so sick that you feel forced to ask for help as you simply can’t go on feeling that way. Or somewhere in between.

In any event, I know when I am willing to ask for help I really I want someone to get it right, explain it to me in a way I can understand it and fix it the FIRST time (or at least give me some hope that it can be fixed if I do some things to help myself).

We’re taught to listen to the doctor, to not question what they say, to trust their expertise. To be a good girl. To not rock the boat. To do what we’re told. It’s so easy to silence that little voice inside us – that gut feel, intuition, knowing – that says that something isn’t working for you when you want help so badly.

I know – I’ve done it more times than I can count. I’m ashamed to say I still do it – though I catch myself quicker these days. But not always.

When I had the willingness to keep my appointment for a second opinion after last week’s adventure with the hand surgeon, the benefits couldn’t be measured til afterwards. Why? Because I couldn’t know what a good fit the second doctor would be for me til – obviously – after I had met with him.

I learned so much, not only about my own health situation, but also about what helps me know I have the right healthcare provider. This healthcare provider:

• Gathers Specific Information: She asks specific questions like this: “I hear you have numbness in both hands. When you have numbness in your hands, where is it? Does it wake you up at night? On the average, how many times?” She listens to my answers and asks detailed follow up questions.

• Explains Recommendations Thoroughly: She explains EVERY test that she is requesting and answers all my questions. She doesn’t order tests without telling me why.
• Makes Referrals to Competent Providers: She works with other providers who are also responsive to my needs, schedule things promptly and ask pointed, specific questions while listen carefully to my responses.
• Gives Detailed Follow Up Instructions: She asks to be contacted as soon as the follow up tests are scheduled to get me back in the office to go over them.
• Has a Support Staff That Makes Things Happen Quickly: Her staff goes the extra mile by getting me in on a cancellation as I requested and also making sure the doctor has the test results before I arrive at my follow up appointment.

NONE of these things happened with the first surgeon. And I had that gut feel that things weren’t right – though I didn’t want to admit it to myself because, understandably, I really wanted the first hand surgeon to offer me what I wanted.

I didn’t know the difference between a responsive hand surgeon and one who wasn’t until I had something to compare it to. And, I had to be willing to trust my gut that something was off. Thank God I was willing to do that.

Having said all this, people vary. What’s the right provider for me may not be what’s right for you. And your opinion is the only one that counts when it comes to getting your healthcare needs met.

If you’re struggling with something that is overwhelming and hard for you, it’s understandable if you’re frustrated, sad, angry, numb, shocked or anything in between. Permission granted to feel whatever you’re feeling . . . . and also there’s help.

There’s more than one way to deal with what’s hurting; in fact, there’s so many that that can be overwhelming in and of itself especially when you’re not feeling well.

If you choose to see a healthcare provider, go to your appointment prepared and trust your gut feeling on whether you’ve got someone who can really help you.

Here’s the most important take away for you today:

Remember . . . . though you may be in the role of a “patient”, you’re not damaged goods. You have some issues that you need help with. You’re a healthcare consumer and making a purchase for your most important client – yourself.

Get more than one opinion if you have any doubt about the first one. And keep looking for help until you find the healthcare provider that’s right for you. For every provider that is inattentive, I believe there is another provider who practices with integrity and professionalism.

I’ve heard it said that you should never go to a surgeon’s office by yourself; you need a second set of ears to make sure you get the story straight.

Though I believe that’s true, what is also true is that I didn’t have someone with me today while I was at the surgeon’s office.

And you know what?   Even though I was in pain and scared and overwhelmed by the whole situation, I felt grounded and focused.

Why?  Because I had prepared for my appointment ahead of time by using my Appointment Preparation Worksheet.  It took two minutes to fill it out.  I also kept track of my medications, symptoms and medical history using Patient Power so I had all the information I needed right at my fingertips.

At a time when I felt so vulnerable, I had the tools I needed to stay on track and remember what hurts, what makes it better, and what aggravates my symptoms.

And you can have these simple tools too, and walk into your healthcare provider’s office feeling clearheaded and secure.

Here’s what happened to me:

I arrived early, filled out the necessary paperwork and was greeted promptly by a very helpful nurse who performed some initial tests.  So far so good.  However, I was thrown off track because, after explaining my symptoms and how the computer aggravated them, the surgeon said:  “You have bilateral carpel tunnel and it’s a myth that working on the computer causes carpel tunnel.”

I felt angry when he said that and I said to him, “What I’m saying to you is that my symptoms are worse when I’m on the computer, and I know that for a fact.”

He simply retorted: “And what I’m telling you is that the computer is not causing your symptoms.  The computer has nothing to do with your symptoms.”  He then went on to quote a prominent study to support his statement.

To tell you the truth, I wasn’t interested in science.  I wanted help understanding why my hands hurt, what my diagnosis is and what my treatment options are.

Telling me that my symptoms, which are most intense when I’m on the computer, are not caused by the computer felt invalidating and unsupportive.

Though he may be correct and I’m sure he’s up on the latest scientific studies, this kind of information did not give me the feeling that he understood how much I use my hands for work and how this adversely affects my daily life.

This is just the kind of thing that happens to me (and lots of other people) all the time.

When I’m uptight and uncomfortable and a healthcare provider appears to be challenging me on the legitimacy of my symptoms, it’s easy to forget why I’m asking for his expertise.

(In fairness to this surgeon, I’m sure what he was trying to do was to dispel a myth about carpel tunnel and give me some data in support of his statement.  It just wasn’t a match for my needs for empathy and understanding.  And it caused me to momentarily  lose my focus about what I really wanted information on.)

Here’s what’s important for you to remember:

If you tend to get overwhelmed when you’re dealing with your healthcare provider, by writing things down you can stay on top of your game. Just the act of writing things down helps you remember them even if you forget to look at them as you’re talking.

Why?  Because writing things down gives your brain a break from remembering things. And everyone’s brain deserves a break in this very hurried world we live in.

If you are forgetful – as I am -  writing things down helps as well.

And, if you know you’re forgetful, you can train yourself to look at what you’ve written down OR go back to the office (as I did) when you forget to ask something important.

Next, when a healthcare provider is talking so quickly that you can’t take it all in, you can verify your understanding by using my materials. It’s easy to make sure you’ve understood what they’ve said correctly and a good provider will want you to understand their recommendations clearly.

Give your good brain the rest it deserves especially when you’re not feeling well.

Prepare ahead of time for your appointments, make sure you got the story straight, and then you’ll have what you need to use the healthcare system in a way that works for you.

As a Jewish Mother, let’s just say I fit the stereotype of overprotective quite nicely.   Though I know there are some things that are better left unsaid, the frustrated lawyer in me sometimes gets pretty indignant about things when I feel life has dealt my kids something they didn’t deserve. I do a fairly good job of keeping myself in check so they can learn the lessons that are available for them when things don’t go as planned . . . . . but what happened to my oldest son the other day has really got me steamed up. With his permission, I’ll share this little rant.

He has had some serious bad bike karma.  Two times now his bike has been stolen.  The first time happened while he was in college.  The second time, he loaned his bike to his roommate who went out and “forgot” to lock it up in Washington, DC.

Apparently, bike thievery is rampant there and you’re asking for it if you don’t lock your bike up in at least two places.  After collecting the money from his roommate, my son proudly purchased a new bike complete with two bike locks from Revolution Cycles in Washington, DC.   His bike is his primary mode of transportation and he made his selection carefully, being especially mindful about bike security – hence the kryptonite lock plus the cable lock recommended by the store.

Three days later, while out to dinner with his friends, he comes out of the restaurant to find his wheels and seat which were locked up with the cable lock missing. Immediately he contacted the store and shortly thereafter took everything in.

The store was completely unsympathetic, wouldn’t stand behind the cable lock that they sold him and the cost to replace the wheels and seat were almost as much as a brand new bike. When I heard this story, I went bezerk.  How could they not be sympathetic to his situation?  The bike was three days old.

The fact that this store sold him the cable lock expressly to protect his wheels and seat, and still were  unwilling to stand behind its product- which is the reason he bought it in the first place – was appalling.

My son is self sufficient financially and did everything he could to protect his property, and some idiot decided he needed his wheels and seat for reasons I’ll never understand

He said it’s a bought lesson – his next bike will be a cheap used one. I guess, given his bike history, that makes sense.

Though I agree with his conclusion, I have a big problem with Revolution Cycles and the way they handled this situation. They are out of integrity when they didn’t offer some reasonable ways to handle this unfortunate situation.  Had they offered him a discount, a refund on the lock, some used parts, or some other accommodations given the way this happened – I’d feel differently.  Their unsympathetic uncaring attitude is deplorable.

There are bigger problems in the world than a stolen bike I realize.

And since my passion is helping you make informed choices about your healthcare, I would like you to consider your relationship with your provider, and a health situation that you’re in the process of addressing. Like the bike shop I mentioned, your healthcare provider is advising you on what you need to do to take care of yourself.  I want to be sure that your needs are being met – and that you’re not being offered solutions that won’t work, much like this cable lock that turned out to be worthless.

Perhaps you’re frustrated that your provider doesn’t fully understand your situation as you’d like her to.  Maybe you’ve used my Appointment Preparation Worksheet, been as clear as you know how to be about what’s going on with you and your provider still isn’t getting it despite numerous office visits.

Just like my son who used two locks on his bike to keep it secure, you’ve done all you can to be sure your healthcare provider understands what your needs are.  Maybe you keep shelling out money and time – and you’re getting nowhere.

Or perhaps your frustration is with some of the staff who aren’t getting your messages straight, not returning phone calls or not getting your prescriptions correct.

If you’re frustrated, I get it. I’ve lived my own version of all these scenarios and I know how exasperating it can be to be doing everything possible to be pro-active about my health and still not get the attention I need costing me time, heartache and unnecessary expenses.

But, here’s where it gets interesting.

Instead of deciding that that’s just the way it is, here are a couple options:

• Speak up: Tell your healthcare provider exactly what isn’t working for you and what you want in one sentence.  Ask them if they can help you with it?  Clarify that you understand their answer and then make a plan together complete with follow up instructions.
• Send a Letter:  If it’s a staffing issue, send a letter factually describing the problem to the provider and suggest that they read your letter in a staff meeting.   If you want a response to your problem, let them know that.  If you just want to make them aware of it as the situation has been resolved already, you can let them know that as well.  If your healthcare provider doesn’t know how their staff is interacting with their patients they can’t correct any future problems.
• Find Another Provider: This one is often easier said than done especially in these days where primary care providers are harder to find.   If you’ve been with your provider for a while, it’s important to weigh whether the benefits truly outweigh the burdens and whether it makes more sense to speak up or send a letter.
• File a Complaint: This is a legitimate option where the provider’s conduct has been unconscionable and not one to undertake lightly at all.  At the same time, there’s a reason we have licensing boards, ethics boards and similar administrative agencies:  they are there so that all patients are protected from behavior that is unprofessional.  If you choose to use this option, I strongly encourage you to let your provider know that that is what you are doing and give them a chance to resolve the situation first.

I felt sad when my son decided it was time to get a cheap used bike as he couldn’t afford to keep the bike of his choice safe in the streets of DC. I want him to be able to have a nice bike and enjoy it – and this is out of my control.  He has to make the choices that are right for him and no amount of Jewish mothering will insure that his bike won’t be stolen again in the future.  I think he’s smart to cut his losses and get a cheap bike actually – though I hate to admit it.

I also feel sad whenever I hear of patient’s whose healthcare needs aren’t being met.

I do believe that “the squeaky wheel gets the oil” (pardon the terrible pun) and if you aren’t getting your healthcare needs met in a way that works for you, you owe it to yourself to go back to the drawing board.  Look at your options. See if you can address the situation with your healthcare provider first.  Or, if you’d rather be done with that particular provider, figure out exactly what was missing in that relationship, get referrals from people you trust, and interview new providers before allowing them to treat you.

Are your healthcare needs being met in a way that’s working for you? If so, that makes me happy.  If not, you’re welcome to contact me privately or leave a comment and we can brainstorm on how to get your healthcare needs met in a way that’s a match for your needs.

Have you ever been out to lunch with someone and they ask you a question when your mouth is full?  What do you do?  If you’re like most people, you probably never thought about this – and I wouldn’t think about it either – if it hadn’t been for this story someone shared to me about a recent dental visit.  But, I’ll get to that later.

Coming back to our original story here.   How do you answer a question when you’ve got a mouth full of food?

Ann Landers would say that the polite person notices your mouth is full of food and waits to ask you a question.  Or maybe she would say that you hold your hand up before responding, finish chewing and then respond.

And in this hurry up world of ours, I often find myself answering questions with my mouth full. I know – not a pretty site.  Since I love food, I tend to rush while I’m eating anyway.    If I’m answering as I’m in the midst of a mouthful, chances are good that I’ll answer the question quicker or less thoughtfully than if my mouth was empty.

Which brings me to this story about the dentist.  Have you ever noticed that the dentist asks you questions with his hands in your mouth?  Talk about having your mouth full!

I can understand when a dentist is probing for sensitive areas and has to get feedback as he’s poking around.  It makes sense that he would say something like:  ”Does it hurt when I touch here?”   It’s easy to give yes or no feedback – even a grunt will do the job.

But, when they ask things like, “When did you first notice this pain in your gums?”  it’s almost impossible to fill them in on the whole story. If you’re anything like me, I struggle to give a complete response so I give them less information than I would otherwise.

The other thing that has surprised me is though I know what I am saying, it comes out pretty unintelligibly and yet they seem to get what I’m saying.  How do they do that anyway?

And when they don’t have all the information they need, it makes it harder for them to do their job.

Once I heard this little vignette, I tuned into my own dentist’s modus operandi.  I’ve been with her a long time.  I also have to say that I’m a dental nut.  My beloved Uncle was my dentist and he instilled in me the importance of good oral hygiene while I was in utero.  I interviewed my dentist extensively before deciding she was a good fit for me and my family.

Anyway, here’s what she does every time I see her.  She reviews the notes from her assistant which are on the computer, she comes and stands in front of me, asks me whatever her questions are and THEN probes around checking for sensitivity and other issues.

If she asks me something I can’t answer fully, I stick up my hand and let her know.  Why?  Because I want to get the best care possible and I know she needs all the facts to do this.

When she’s done examining me, she tells me what she’s found without her hands in my mouth.  I make sure I understand her instructions and then we usually share a quick laugh about something to do with our kids.  I have always appreciated her – but I never knew why – until I heard this little story about dentists talking to patients with their hands in their mouth.

The world moves quickly as we all know. It’s up to us to stay connected enough with our own experiences to let our provider’s know when what they’re doing is interfering with our ability to either give information or understand what they are saying.

Here’s the important part.  If your dentist is asking you questions and you can’t respond fully as their hands are in your mouth, stick your hand up or find another way to let them know you’ve got more to say.  If a doctor is probing around and telling you about treatment options, findings, or anything else – and you’re feeling distracted by what they’re doing to you and trying to listen at the same time – say something.

You may think they don’t have time to listen or that this is no big deal – and that may in fact be true some of the time.  But, tune in to when it’s not true and when you’re censoring yourself because you’re really not in a spot to talk about what’s going on with you or you can’t listen fully.  By gently noticing this, you can trust that you’ll know when it’s time to find another way to get your healthcare needs met without “talking with your mouth full”.

I was at the dentist today getting my teeth cleaned and the hygienist and I were chatting about our kids.  We were talking about how, at a certain point, it does no good to strategize for them – especially when they aren’t interested in our point of view.

She then was describing how her daughter, who has an hour commute, calls on the way to work most every day to talk about “this, that and the other thing”. I laughed remembering how I used to do the same thing with my Mom when I was in my 20′s and how my two boys answer most questions pretty straightforwardly – there is NO “this, that and the other thing” with them.

Which also made me laugh because “this, that and the other thing” is a pretty common way of describing what’s going on with us  a lot of times.

But, the problem with describing things generally like this or in a rambling way is twofold:

• We may not know what we really want or need
• Someone else may not know what we want them to do or say to them
  

Here’s an example.

I was talking on the phone with my friend Janet who was telling me about “this, that and the other thing”.  There wasn’t room for me to get a word in edge-wise other than an uh-huh or a quick question.  Janet wasn’t interested in what I had to say – or so it seemed.  I actually never got around to asking her because she had to go.

I’m not sure if there was anything in particular that Janet wanted me to know about or whether she was asking me to do something.

What I do know is that though I felt engaged with her story and interested in the details, I wished there was some room for me to share what was going on in my world.

The truth is – I never asked her to listen to me so I can’t know what would have happened.   And that’s no one’s fault.

So, what does this have to do with ‘this, that and the other thing”?

Here’s the point.

When we talk about things in a general way to other people when we really want them to know something specific, it’s difficult to get our needs met. In terms of taking care of your health, in my humble opinion, there is no place for “this, that and the other thing”.

There is a huge need for sharing specifics about what’s not working with us and what we want help with.  Here’s a way to do this so your healthcare needs can be met in a way that works for you.

I read this blog post which was a letter from a physician, Dr. Rob, to patients about looking at healthcare from the provider’s perspective.  You can read it here.

This shocked me.  Healthcare providers are often afraid of their patients.

After really acknowledging how hard it is to be a patient in pain as well as the inherent difficulties of explaining it, Dr, Rob goes on to say:

You (speaking of patients here) scare doctors.

No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

Whaaaat?  But they have all this training, they make all this money, surely they’ve been trained in how to deal with this stuff.  And besides – I’m hurting here and I n-e-e-e-d their help. I’d never considered that a healthcare provider could be afraid of me when I’m so absorbed with my own story.

Frankly, this idea that a healthcare provider might be afraid of anything was shocking to me.

So, what are they afraid of?  Dr. Rob does an amazing job of explaining this here:

You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance. They (meaning healthcare providers) may feel overwhelmed by the complexity of our symptoms.  They’re (again, speaking of healthcare providers)afraid that no matter what they suggest, there may be nothing that can be done.

And, as I read that, I realized that these are the same things I am afraid of sometimes when I have pain. I’m afraid no one can help me and no matter what they suggest or what I try, it won’t work.  I’m afraid I need a miracle and there just isn’t one.

Interesting that we both may share the same fears.  We touch on their mortality as we are feeling our own when we’re in pain and can’t figure out how to make ourselves feel better.

It opened my eyes to how important it is to be kind, not just to ourselves (which can often be very challenging and is at the heart of my work) but also to our provider’s that are often, frankly, afraid of us.

Of course, it makes sense that regardless of how much training a healthcare provider has had – they are human just like us.  It’s difficult to see others in pain; it often brings up our own pain and vulnerability when we see others hurting.

I really respect healthcare providers who do their best to help us when we’re struggling.  I also know that there are some healthcare providers who, for whatever reason, are unable or unwilling to listen to us and explain things clearly. For every provider who is trying their best, there are just as many who aren’t.  That’s reality.

It’s also true that there are countless horror stories of patient’s whose needs have not been met by their healthcare provider.  There are many cases where patients have felt more harmed than helped which often leads to fatal or long lasting consequences.  When we hear of one of those situations or are personally affected by something like this, there are no words for the aftershocks and I am in no way discounting those situations.  This post does not address those very unfortunate circumstances that I just described and my heart goes out to anyone who has been through something like this.

There are also insurance, financial and practical considerations involved that may limit our choices.

And, despite those limitations, I urge you to find the provider that speaks the same language as you do and work hard to build that relationship – because I truly believe in the goodness of human beings and healthcare providers in particular.  And, where there’s a will there’s a way to find the healthcare provider that is right for you.

I’m not suggesting you treat your healthcare provider with kid gloves.  I am urging you to find the provider who is a good match for your needs and to appreciate their humanness as you share what’s going on with you.

In the best circumstances, we partner with our providers to improve our health.  That requires mutual respect, clear communication and a willingness to be appreciative of each other’s position.

Just as you’re asking them to understand – to get – what it’s like to be you, it’s important that you get that they’re human beings too.

What do you think?

I’m having a free teleclass on How to Get Your Needs Met with Your HealthCare Provider.

I’ll be teaching you a way to notice what’s going on with your health in a non-scary way first. Then, I’ll show you how to communicate it clearer, easier and more efficiently with your provider which enhances your ability to get the healthcare you deserve.

I’ll be making a recording (technology willing) and sending it out.

I want to assure you that you can show up anonymously and listen or participate to whatever degree you’re comfortable. My intent is to make this a safe space to explore things that may be challenging in a way that feels supportive and private for you.

Here’s the call information:

Date: Thursday, July 15^th

Time: 1PM EST (10AM PST; 12 Noon CST; 11AM MST)

Phone Number: 605-477-2100

Access Code: 577345#

You’ll want to have something to write with available as well as the Appointment Preparation Worksheet which is available for free by clicking here.

Talk to you tomorrow! In the meantime think about something that’s going on with your health that you want to be sure your provider understands, or something that’s bugging you about your current relationship with your healthcare provider… or, don’t do anything and just show up!

Have you ever felt like you didn’t have the right words to explain what you were feeling to someone else? Perhaps, you get slight twinges in your knee when you least expect it (I mean, who wants to expect that anyway?)  Or, maybe, you’ve got arthritis, fibromyalgia, or depression that is pretty constant but the shades of it change in subtle ways.

Part of being human is that when we feel things unexpectedly, it takes a moment to recognize that and then to find a way to describe it.

What I’m suggesting is to give yourself a moment to just check in at those inopportune times when things are going slightly or very much awry. That, in and of itself, can be a bit of a retraining.  If you get nothing else from this post, just notice whether you’re willing to do that.

And here’s a blanket permission slip to accept the first answer that comes to you . . . whether that’s a complete willingness to notice for one second what it feels like being you or an absolute no.

Because you can’t do this wrong.

Even if you’re unwilling to notice what’s going on with those little aches, twinges, or constantly changing illnesses if you have one, that’s information.

And getting that kind of information is a first step to getting the healthcare you deserve.

Make an appointment with yourself FIRST to get the healthcare you deserve.

Whaaaaaat?  How can that possibly help anything? Whether you think it’s hopeless trying to describe what you’re going through or you think there’s no one in the world who can help you – or anything in between – I can show you how to get your healthcare needs met easier, better and faster than you could before.

And, if you’re someone who is frustrated because you know what you need and have explained it over and over again, I hear you. It is frustrating when you’ve done your best to be articulate and things still aren’t changing for you.

AND, there is a way to increase the odds that you and your provider will speak the same language so you can get your healthcare needs met.

Curious??

I’ll show you how to do this at my free teleclass “How to Get Your Needs Met By Your Healthcare Provider” on Thursday, July 15^th at 1PM EST (10AM PST; 11AM CST; Noon CST).  You can sign up on the blog by sharing your email address or contact me and I’ll send you the call information.  There will also be a recording of this class (technology willing) if you can’t make it.

Hope to “see” you there!

I was talking with a friend and colleague who has chronic pain as a result of fibromyalgia.  She is taking several different medications, her symptoms change frequently and she had many concerns and questions.

She’d thought about filling out the Appointment Preparation Worksheet before her doctor’s appointment but didn’t get around to it.  She said she “kicked herself” afterwards as she froze up when the doctor came in, unable to articulate her questions and concerns.

She recently was vomiting and having incredible pain.  

She was able to pull herself together enough, before leaving for the ER, to tell her husband to take notes on the Appointment Preparation Worksheet about what was going on (in between bouts of horrendous pain and other horrible-ness).

Here’s what she said:  ”When I went to the ER, I got to be the patient and didn’t have to advocate for myself.  What a relief!”

That’s such a huge thing especially when you’re too sick to talk about it.

Her husband signed her in and gave the Appointment Preparation Worksheet to the receptionist who made a copy for her chart.  The doctor’s  read it as they were examining her and several staff members mentioned how appreciative they were that she had everything in one place.

As it turned out, she had a gall bladder attack and needed to have her gall bladder out.  She also explained how much my work helped her while she was in the hospital.  She found herself much more willing to ask for what she needed (rather than pretend everything was alright).

“Even the name, Patient Power, helped me realize that I don’t have to be a victim anymore.  I can ask for what I need rather than feel guilty because I need help.”

She said in the past she’s felt so much guilt for having an “invisible illness” that clearly compromises her daily life and can’t be seen by others.  ”It’s not like having a broken leg where there’s a cast and everyone knows that something is wrong.”

“Invisible illnesses” are my pet peeve because finding ways to explain what’s going on with you internally is so difficult.

That’s why I was so proud of her that she ASKED her husband to fill out The Appointment Preparation Worksheet as she was describing what was happening.   “Ask and you shall receive!”

It is my mission to help people who don’t feel well find the words to express themselves clearly.  That’s why I developed the Appointment Preparation Worksheet that is available right now for you for free.  I also created Patient Power to insure that you and your provider are on the same page.

Use my materials with your healthcare provider and let me know how they work for you.

I noticed from the moment I picked up the phone that my client was unusually quiet. She’d been dealing with mental health issues as well as some back pain.   She had been with a competent therapist and psychiatrist for a while to manage her mental health.

She found my material particularly helpful because she could now talk with both her therapist and her psychiatrist more specifically about what was going on with her. The key was when she began using the Appointment Preparation Worksheet ahead of time.  She felt more focused on her issues of the moment instead of thinking through things hurriedly and forgetting important stuff because, as we all know, appointments end all too soon sometimes.

The results for her were profound:  it was easier for her psychiatrist to tweak her medications, her therapist was able to target her needs and suggest specific helpful strategies more clearly, and she was able to observe what her situation was as it was happening because she was tuned into the philosophy of  Patient Power.

When I heard the lifeless tone of her voice, I listened as she described how responsible she felt for the well being of others and how frustrated she was by her inability to just “be okay already.”  She was she was giving up, that there was no help for her and she was unwilling to keep trying so hard to “get it right.”

Please remember that I am not a medical provider.  I am passionate about helping people who don’t feel well speak the same language as their providers so that they can get their healthcare needs met.

Having said that, the first step in speaking the same language as someone else is to meet YOURSELF where you are in the moment.  No one does this perfectly – that’s not the goal.  What I want you to remember is that it’s important to do the best you can to notice your thoughts and feelings and I strongly suggest getting it out of your head and writing it down so you can see it more clearly.

It was her husband who showed her a potential blind spot when he said that he had been reading about bipolar and questioned whether she may have it.

When he said that to her, she said she wanted to throw up – just the idea felt both true and impossible at the same time.  She couldn’t face that this too could possibly be adding to her already complex situation.   That’s the dilemma she called me with.

I listened more carefully to her story and felt her pain.  I felt her husband’s concern for her as well.   I understood her fear, her disappointment, and her love for her family.

“What do you think”, she asked me.

I shared how I heard her husband’s concern for her, understood her fear, her overwhelm, her pain and her love for her family. We took some time with this part here as I felt it was important she feel truly acknowledged and appreciated for sharing something so difficult and personally devastating.

After she clearly acknowledged that she didn’t feel unsafe, I made the following suggestion:

“Give your husband a 7 day dosage log and you can both prepare one separately to note the effects of your meds, your mood and also that you’re taking them as scheduled.  Both of you can also keep track using an Appointment Preparation Worksheet of your current symptoms, questions, and how things are changing. That’s the first step.

You can also make an appointment with your therapist and your psychiatrist after you observe this together for a week to ten days.  Then you can go in with clear information if you decide that it’s time to be evaluated.”

She agreed that this sounded like a good plan and would get back to me to let me know how it goes.

Here’s the important learning’s from this case study:

• Vague information won’t get the job done: Going to your provider in situations like this with unclear vague information is NOT the way to get the healthcare you deserve.
• Specific information helps:     Sharing short phrases about your state of mind, physical condition, etc gives your provider clear information so they can custom tailor their recommendations according to your unique needs.
• Listen Up:  Other people’s perspective on your behavior can be very useful (not necessarily definitive though) and we’re all here to help each other.

As always, if you are in dire straits and feel so much pain that you can no longer keep yourself safe, it is IMPERATIVE that you err on the side of caution and seek help immediately.  Only you can be the judge of that.

In Part 2 of this, I’ll share the results of this case study with you and we’ll find out together what this client learned.  My prayer is that she can continue to deal with life’s daily changes in a way that works for her.

I deeply admire her willingness to explore her issues as well as her husband’s courage to share this with her.

What are you willing to notice about yourself today?  Is it possible you have a blind spot like this client did and need an outside perspective?   Or, maybe you’re the person who’s noticing something about someone you love and want to consider talking with them about this?  I welcome your thoughts, comments and insights.