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.