A Patient’s Perspective: You Gotta Want it Bad … or Do You?

It used to be when we wanted something we’d ask how bad we wanted it. We’d either shrug and say not worth the effort or dig in deep and put everything we had into achieving that goal. It’s not like I don’t still ask myself that, but I’m wondering if I’m asking the same question anymore.

Here’s the thing: I’m a chronic disease patient but it’s not that I don’t still want things out of my reach … I’m an over-achiever so that isn’t going to change.

It’s not that I don’t still want things period … I’m not done with living so that isn’t going to change.

And, it’s not that I can’t martial the energy, determination, and assorted resources to put towards achieving a lofty goal … I’m older, wiser, and let’s not forget stubborn so that isn’t going to change.

So why do I hesitate when asked how bad do I want something?

Maybe it’s an appreciation for what it takes to get what I want. Maybe it’s a wary respect for the effort the interruptions, wrong turns, and setbacks demand … or blood, sweat, and tears … that’s required. Trust me, it’s all that.

Or, maybe just getting out of bed is the biggest thing on my list that day.

Yes, how bad do I want it has a new meaning.

And there’s the rub … it’s not just a matter, anymore, of how bad do I want it. Believe me, I want it bad. It’s the despair, weariness, and sheer frustration I have to wade through in order to get what I want.

Case in point: After multiple post-surgical complications I’m finally at what is called “as good as it gets”. I’ve been given the green light to resume my prior pharmaceutical regime which includes a weekly dose of methotrexate. And, I’m able to take on most of the mental and physical activities I enjoy (and those that I’m just supposed to do whether I enjoy or not).

All seems great.

But, I get tired more easily. I have recurring infections at the incision sites. I can’t seem to stay focused like I used to … And that’s just the way it is … I’m not complaining and I’m not looking for sympathy. What I am hoping is to share how it feels to be a chronic disease patient.

Every time there’s another complication …

Every time there’s another surgery …

Every time there’s another something we need to deal with …

Which brings me to the question: What do I want? Simply put, I want to do as much as I can, for as long as I can. My healthcare team is always eager to help me with this goal. They are full of advice. Most of it’s good. Some of it’s solicited.

I know I need to be active. I know I need to stretch my comfort zone. I know I can’t just give in to doing nothing. Just understand, appreciate, and respect that there will be days when it looks like all that gets tossed out the window.

Be careful how you throw down that gauntlet of how bad I want something …

I ask you to consider what you’re asking of me. It’s not just dig deeper. It’s not just keep moving forward. Okay, maybe it is those things, but it’s also understanding just how deep the quicksand is on days when getting out of bed is top of my to-do list.

By all means, keep asking me the tough questions. Keep pushing me just like anyone that enjoys healthy privilege. Just remember, it’s hard to answer how bad I want something when I’m not really sure what it is going to take .. or what I have to give.

It doesn’t mean I can’t do things. It just means if I don’t take into consideration all the things that I have to deal with, I will fail. And, for this over-achieving, stubborn, live til you die chronic disease patient, I like to win. There’s no reason I can’t win. I just have to be clear about what that means.

Here’s what’s clear: Just because some days it doesn’t look like I want much, or am doing much, or even that I’ve changed my mind about what I want … believe me, I know what I want and I want it bad.

It’s just sometimes all I want is to be able to get out of bed.

And we have to accept this too is my life.





A Patient’s Perspective: The Thing About Complaining

There was no coffee left.

I admit it. I was unprepared for a busy weekend with coffee drinkers. And so, I found myself waiting in line to get more.

Now, waiting in line isn’t my favorite activity. Hearing there’s a problem with the service isn’t any better. Hearing someone take a strip off the person trying to deal with it is just too much. It got me to thinking … once I had my coffee … just as there are different types of people and reactions, there is a depth to complaining I had to explore.

Here’s the thing: I get it that sometimes we just keep our mouth shut and put up with it and sometimes we lose it and even over react. But, I look at complaining as a tool that should be used with purpose, intent, thought. Complaining can elicit change in circumstance. Used at the appropriate time, complaining can facilitate better communication. And, with or without forethought, complaining can let off a little of the pain, fear, and sense of being overwhelmed.

Complaining takes many forms.

Sometimes, I complain to share how I’m feeling, to explore what I’m feeling, and to get help from others because of how I’m feeling.

Sometimes, I complain with resolve because I need to be heard. Sometimes I complain with anger or disgust because I need a target other than me. And, sometimes, I complain with hopelessness, much like a cry for help because I am overwhelmed.

Some people complain often, while others rarely. Some people complain loudly and obnoxiously, while others quietly as though they are asking permission to do so.

We complain when we are upset about something.

We complain when we want something to change.

We complain when we don’t know what else to do.

With all this complaining going on around us how do we respond? When do we pay attention? Who do we pay attention to? To what end?

All of which brings me back to my coffee moment. The customer that complained loudly, obnoxiously, and excessively all the way out the door probably wasn’t any happier for having done so, right?

I would never take away someone’s right to complain, but I ask you to consider three things.

One, consider, from your perspective, why you’re complaining, what you want, and if you’re going to feel it was worth it. Yes, we all blow our top on occasion and even sometimes feel better for it. If that’s what you have to do, fine, but then own it, admit it when you look back on it. In other words, evaluate what happened, your response to it, and any results / consequences. That’s how we learn what works and what doesn’t.

Two, consider, from your perspective, when someone is complaining why they are doing it, what they want or need, and if you can help. That’s right … sometimes someone else is doing the complaining … sometimes at us. It’s difficult not to get defensive, but you can learn a lot by taking a breath and just listening to what the other person has to say or what they are experiencing from their perspective. Who knows? Maybe as a result there’s better communication and change for the better.

Three, no matter what never be afraid to speak up, complain, make a fuss. We’ve all been there. Get along. Play nice. Don’t rock the boat. Okay, sometimes we need to do those things and sometimes we need to say enough is enough. There will always be times we look back and admit we should have thought something through a little more. But, I’d rather live with those moments than the ones where I say I should have said something that needed to be said. We can’t count on someone else always speaking up for us.

Yes, there are times we roll our eyes because someone is loud, obnoxious, seemingly unreasonable. But, for me, I see all too often the times when people do not speak up. To me, being labeled a complainer, a rebel, a rabble-rouser is not so bad … just pick your battles.







A Patient’s Perspective: Focus

If focus is defined as the center of interest or activity then I’m all about the focus.

My life is a balancing act between too much focus and not enough focus. As if that’s not enough of a challenge, as a chronic pain patient I often become so focused on one thing that everything else disappears.

Sometimes that pain is so bad it’s all I can focus on. I can’t and don’t focus on anything else. I’m angry at everything, including myself, because I can’t do anything but be about the pain. And, when the pain lessens, and after the initial relief subsides, I look around and see the damage that pain … and my ultra-focus and non-focus … has wreaked on my world.

I’ll be honest, I don’t always know what to focus on. I don’t always know when to focus on something and when to stop. And, there are times I don’t have the wherewithal to focus on anything at all.

I’m often told to focus on what I can do; don’t focus on the pain.

I’m often told to focus on the positive; don’t focus on where my disease is going to take me.

I’m often told to focus on what we are going to do next to manage pain and hold off further damage; don’t focus on what damage is being done to my body and organs every day.

It seems as though everyone has a different idea about what I should focus on; what I shouldn’t focus on. Fair enough, because I have a definite idea about what should be focused on and what shouldn’t.

Case in point: Am I too focused when I’m concerned about whether the red, puffy incision sites from my surgery are looking worse? Am I not focused enough because I didn’t wipe off one of the incision sites after a shower? Did I lose focus too soon? Am I focused too much on how the sites are healing?

Case in point: Am I too focused on whether the physician is paying appropriate and adequate attention to my current concern? Am I not focused enough on the fact that the physician is actually taking notes while I am speaking? Did I focus on the wrong things, not enough things, or what?

Case in point: Am I too focused on being a patient that other parts of my life haven’t had any attention in quite a while? Am I not focused enough because I just can’t seem to get a handle on all the moving parts of my health portfolio?

Here’s the thing: Focus is all a matter of perspective … and it’s always a good idea to consider the other person’s perspective. You could say what is too much focus for one person or situation is just the right amount for another. You could say I have a right to determine the amount of focus I place on anything to do with me. Consider, however, that sometimes what I’m really interested is not paying more or less focus on something, but rather, asking someone else if it is the correct amount of focus.

When I asked about my incision sites, I was told what to look for, when to be concerned, and what to do about it. I had a checklist. I had a plan. It gave me peace of mind so I could focus on other things. Sometimes, that’s all I need … a clear idea of what I should be looking for.

Remember, there’s always a reason for my focus … often it’s pain, fear, a missing piece of information. With fulsome, meaningful, and respectful consideration I can have the kind of conversation with my care team that ensures we are all focused on the best thing at the right time … maybe even at the same time ….

A Patient’s Perspective: A Typical Medical Encounter

Why am I not astounded at what is expected of me as a patient?

Consider this visit to my dermatologist …

In order to be thorough (and who doesn’t want their physician to be thorough) I was instructed to remove all my clothing (except my underwear) and don a gown (why call it that when it really isn’t). As I moved to do so, I observed a floor to ceiling window facing the park outside. There was a cyclist speeding along the path and a small group of people out for a walk.

I resisted the perverse urge to wave.

Returning to my task, I folded my clothes neatly. Seeing no stool available, I resigned myself to an awkward boosting of myself onto the table via one foot on the chair. And then I resigned to wait, only to realize it was indeed very cool in the room.

At last my dermatologist arrived. As a skin specialist and because this was the first time we had seen one another, she wanted to see my skin … from scalp to toes … and so she did, moving my gown as needed in order to conduct the examination.

That over with, she sat at her computer and began to make notes of her findings, asking me questions. Actually, the first question was where was all of my information? You know … the information my referring physician was supposed to have forwarded to her. Without missing a beat she began to pepper me with questions.

Problem was the information she wanted was on my phone … in my purse … across the room.

Now, I know it wasn’t far, but the table was high enough I couldn’t get down easily, and I know she had already seen me during the examination, and I know I had already made peace with the folks outside, but I hesitated. This was just one too many indignity for one morning.

Was it merely unfortunate there was a window without covering, the room was cold, the table too high, and the gown too un-gown-like?

Was it merely too far-fetched technology has not advanced to the point where a physical examination doesn’t require clothing removal?

Was it merely inconvenient my personal health information had to be repeated, yet again?

It’s ironic that the reason I was at the appointment was less important than what I learned about how I can be treated as a patient and as a human being. I left my appointment feeling I could have been treated not just a patient that must be examined, but as a human being who must be interacted with …

Here’s the thing: As a patient we are stripped of our power, our dignity, our choice, often through no fault of our own other than we require the services of a healthcare professional.

Where is the power, the sense of control, strength, and knowledge?

Where is the dignity, the sense of respect, worth, and esteem?

Where is the choice, the sense of alternate possibilities, options, and outcomes?

I don’t know what new affliction this is; it’s why I’m there to see the physician. I lack the ability to figure out what is wrong and how to fix it. However, I do know there is something wrong … so listen when I speak.

I don’t know why you don’t have all my health information already; there seems to be enough people and systems with who I’ve shared  that information. I lack the ability to figure out how to get the information to everyone without having to repeat it each and every time … that is, information that is so basic and yet so difficult for a patient to remember and repeat when we are in pain, scared, and uncomfortable.

I don’t understand why the place I go to get help has to be so uncomfortable,  intimidating, and degrading. I lack the ability to do much about any of this except to say loudly and often that there is a list of areas that could use improvement … warmer room, privacy, adequate “gown”, safe access to examination table, and access to my information, just to name a few.

Consider that, very often, as a patient, I am seen if not at my worst, certainly not my best when I walk through your doors. I am vulnerable. I am asking for help. As a healthcare professional, you have something I need, something I can’t easily get anywhere else … and we both know it.

If I had a choice, you likely wouldn’t see me again.

Life Happens

When I haven’t posted anything for a few weeks, there’s always a reason. It’s not likely I lost interest. It’s not likely I have nothing to say. It is most likely some facet of my health has consumed all focus, all energy, all everything just like a black hole.

Sometimes, rather than being a positive force, having such focus is like being lost …

I lose track of time. I lose track of what’s going on around me. I lose track of everything, everyone … even me.

I’ve been encouraged in the past to share my perspective of this journey of being a chronic disease patient with all its ups and downs as it happens. I have resisted quietly … and not so quietly … from doing so and the reason is maybe not what you’d expect.

It’s certainly not that there aren’t things to share … there’s the dreadful experiences, awkward situations, unbelievable indignities, heartwarming kindness, inspirational grace, and so much more.

It’s certainly not that there aren’t people that want to hear about it … there are many people writing about their experiences as they happen.

And, it’s certainly not that there aren’t people that need to hear about it.

I guess I’m just not certain what I think about some of the experiences as they happen to me. I guess I want a little time to get some perspective. And, I guess I want to keep a little of some of it just for me.

That said: Imagine being transferred to a cold and unbelievably hard table in the operating room, furtively trying to grasp the edges of your flimsy and oh-so inadequate hospital gown. There are several sets of hands on you … people that you likely have only just met and hope like hell know what they’re doing. You’re not sure exactly what they want you to do because several are talking at the same time. It’s like you get tunnel hearing as well as tunnel vision.

Everything is overwhelming and it doesn’t help that you’re shivering when they tell you to stay still.

Could be it’s very cold in the room.

Could be you’ve just emerged from a warm cocoon intended to raise your internal body temperature.

Could be you’re scared as hell because you know you’ve signed up for this and it’s way too late to back out even if you wanted to …

Now, imagine you’re leaning over the edge of that cold, hard table, facing someone you’ve only just met, who is holding you firmly because they are supposed to prevent you from falling off the table. Why would that be a concern? Well, the person behind you, whom you’ve also just met, is giving you a spinal. To make it better, to get access to said spine, the hospital gown is thrown to the sides, giving anyone behind you a great view of said behind. And there goes any semblance of modesty.

There is no dignity.

There is only what needs to get done.

Here’s the thing: I’m not just the patient that shares my perspective and experiences. I’m also the patient that has these experiences … the enduring and the processing of what it means to me.

Was it a positive experience? Was it a negative experience? Was it a necessary evil? Was it possible to improve on the experience? If so, how? I would love to be able to answer these questions, I really would.

And, while I appreciate the opportunity to provide feedback on my experiences by the hospital that treated me, I would prefer the time to process what happened, how I feel about it for good or bad.

With time, I heal. With time, I can think again because I’m not in such pain, nor am I muddled because of pain-killers. With time, I pull all the fragments of conversations, situations, and people that surrounded me and a picture of what happened, how I feel about it, and what I want done about it emerges.

I want a conversation … and that can’t happen without giving me time … time to be me and not the patient that has only just emerged from the operating room.

I will share my experiences, my thoughts, my feedback … the only question is will you listen and what will you do with what I share?

Chronic Disease: How to do the Holidays

There’s something about this time of year …

It’s the crispness of the air, the smell of pine needles, the cheery multi-coloured lights. Of course, there’s another way of looking at it: the cold and bitter snow, the slippery and invisible ice, the rushing and irritated people everywhere.

No doubt about it, for every person that happily dances in the snow, you’re going to find a person that complains and curses the wet stuff. And, it’s the same with every other aspect during this holiday time.

Is it because some people enjoy the hustle and bustle while others do not?

Is it because some people enjoy seeing people, exchanging well wishes and gifts while others do not?

Is it because some people enjoy being in this moment, while others because of their circumstances can not?

I won’t answer for everyone, but I can tell you it isn’t easy finding enjoyment in a moment that holds worry, fatigue, and pain. That doesn’t mean a person with a chronic disease can’t enjoy themselves; it just takes a little more … and less … everything.

I can enjoy socializing … if I don’t do all the hosting.

I can enjoy exchanging well wishes and gifts … if I don’t do all the shopping and wrapping.

I can enjoy all the moments of the holiday … if I catch up on sleep and remember to eat regularly.

(Okay, that last one isn’t usually a problem when there’s food in front of me.)

Much of the advice a physician gives to a person with a chronic disease is equally good for the healthy privileged. There are, however, a couple things to keep in mind.

First, know your limits. Everyone has a limit to what they can do physically, mentally, emotionally. My limits may be less, may be more, but they’re likely not the same as anyone else’s … that’s why they’re mine. For me, when I start to feel weak, start to shake, change colour … that’s when I have to stop, sit down, maybe have a nap.

Second, set your boundaries. Simply put, you have to make it clear to everyone around you what you are prepared to do and what happens if you are pushed. For me, I’ve set an activity each day with down-time to prepare and recover. Anything more and I will say no. The trick is to mean it when you say it.

Third, don’t forget the fun. We try to make everyone happy, be “fair” and see everyone that asks, try to make everyone feel special … but if that just sounds like work, then you’re doing something wrong. For me, I know the people I want to see, arrange a date, activity for each, and then let the fun happen. I have to remember this is not just fun for others, but fun for me … if it isn’t then why do it?

There is always the possibility I’ll be in too much pain, too tired, too sick.

There is always the possibility I’ll get pressure to do more than I can or want.

There is always the possibility of disappointment, frustration, and sadness.

I don’t have all the answers; I just know that if I make the plans like anyone else would do for the holidays, but with my energy levels, my wants, needs, and preferences in mind, then I’m much more likely to have the holiday I hope for.

Now if I can only follow my own advice ….

I am the One Issue per Visit

I really don’t like waiting in my doctor’s office.

Don’t get me wrong, I hate waiting, but it’s the stuff on the walls that really bothers me. Having never considered myself overly squeamish, I admit to having trouble looking at what passes for wall-coverings.

There’s the full colour, larger than life, bacterial and fungal skin infection poster.

There’s the full colour, larger than life, ear, nose, throat, and lung infection poster.

There’s the full colour, larger than life, what else can be wrong with me poster …

Since I’m rarely at the doctor without waiting on some scary test result or the like, I’m feeling really on edge, until I spot a blessedly plain white paper. Heartened, my eyes focus on its message.

“Limit One Issue Per Visit”

Now, the words “one issue” are in bold and underlined and the “one” is even highlighted in faded yellow.

Those other posters aren’t looking so bad now, are they?

So, I have to wonder, is that a demand, request, or conversation starter?

Sure, I’ve asked my doctor about it before. I’ve never had a satisfactory answer … probably because she doesn’t have one to offer.

I can empathize, I really can. There’s only so much time and you don’t get paid if you can’t bill for the time taken. It’s an impossible quandary: spend the time with the patient as you’ve committed to do OR get paid for the work that you deserve to be compensated for.

Here’s the thing: I do what I can to bring a single issue to each visit, even if that means booking more time or a second appointment on another day. Consider what that means: I’m a chronic disease patient and getting out to that appointment isn’t easy on the best of days. I don’t have simple issues. I don’t have a single issue. I routinely have more than a single test result or condition to discuss. And, considering it can take a couple weeks to get a single appointment, god only knows what new weird and unpleasant things have entered into my health orbit.

So, there I sat waiting for what was going to be really bad or only bad in the “we still don’t know what’s wrong with you but have ruled out some really bad things” sense; all the while studiously ignoring the infection posters because that’s really what I don’t need to be thinking about at that time. And, I wondered, should I feel guilty that not only do I have to discuss this test result and next steps, but what appears to be a new infection at my previously healed PICC site?

The stark black and white paper notice demanded a response. I wasn’t sure what it should be. My doctor isn’t getting the wool pulled over her eyes. She knows I’m a complex walking set of issues.

Whatever is wrong with me at that moment is tied to everything else about me. We can’t discuss a new medication without considering what happened the last time I tried something new. We can’t discuss ruling out one possibility without considering what the last test showed. We can’t treat one infection without considering all the other infections I have going at the same time.

I want to respect my doctor’s time.

I want to do my part to ensure my doctor is compensated fairly.

I want my doctor to treat the whole me, each and every time.

Too often, as patients, we push for one more question to be answered, one more concern to be allayed, one more possibility to be considered … and we feel guilty.

Too often, as patients, we are concerned how we sound when we ask for what we need,  how we look if we still don’t understand and ask for further clarification, how we seem when we just can’t stop crying … and we feel guilty.

Too often, as patients, we return home with less than what we want, need, and deserve … and we feel guilty.

There has to be a balance and here’s mine: One issue? Fine, I’m the issue. I, the patient, am the one issue. I will respect the time limit. I will read anything and everything you ask me to. I will come prepared with questions, paper to record our exchange, and an advocate when and as needed.

Here’s what I want in return: Patience. Forthrightness. Respect.

Be patient with my questions, my concerns, my tears …

Be forthright about what you know and don’t know, can and can’t do …

Be respectful of what it takes of me to come to you vulnerable, scared, and in pain.

One issue?

No problem.

I am the one issue.

Me, the patient … we’ll figure out the rest together.