One of the things I think I know is that multiple myeloma is often harder on caregivers than it is on the person with the disease.

To some, that may seem counter-intuitive. You’d probably consider that the person with the disease is the one confronting the harder road to travel on, but I believe such a perspective ignores the turmoil, the emotional roller-coaster. and the uncertainty that caregivers face.

I don’t mean to diminish the impact of what becomes an endless life-and-death battle with disease for those with myeloma. I do think, however, that for those who love, care about – and care for – those of us with this disease, it’s far more than that.

Within a few hours of understanding what my diagnosis meant, I turned to Linda, my wife, and said to her, “I’m sorry to do this to you.”

She looked at me incredulously.

It’s pretty much a given that myeloma is going to shorten my lifespan significantly. Caregivers and loved ones of myeloma patients have to deal with that and the uncertainty that comes with it. Moreover, ultimately, they know that they will have to come to grips with the sense of loss that’s going to happen when a myeloma patient passes on, no doubt many years earlier than anyone had anticipated in one’s pre-diagnosis life.

In between, our caregivers face the fact that for a number of years – at least we all hope that it’s going to be many years – they will be dealing with someone who will face a pretty wide sweep of disease symptoms and treatment side effects. Scattered in between will be those good times when treatment keeps the disease at bay, and an almost-normal lifestyle is attainable. Yet, the caregiver has to wonder even then about how long it’s going to last.

Meanwhile, those of us with myeloma find ourselves so often leaning on our caregivers.

I consider myself a reasonably intelligent person, but in the complexities of myeloma treatment, there often is a large amount of information that’s thrown at you at any given time, and keeping track of it all can be difficult.

In my case, Linda has been at every single appointment with my myeloma doctors and other specialists. I can say that there have been times when for me things have gone in one ear and out the other at these physician visits. Linda has been the one who keeps track of everything. I can’t tell you how many times I’ve asked her something like, “What did we talk about at my last appointment with Dr. so-and-so?”

And, we patients can be hard on our caregivers. I frequently joke that as much as Linda wants to keep me alive as long as possible, I think sometimes when my irritability rises (to put it mildly) as I come down off of dexamethasone, she might be contemplating ways of hastening my demise.

When I was first diagnosed, I spent a lot of time roaming around the Internet looking for information, about the disease and about how people coped with it. If you’re reading this article, I’m pretty certain you’ve been doing the same thing.

Back in 2006, I came across a blog where the writer went through the travails he faced through myeloma treatment. Throughout the many months of entries, his wife was an integral part of what he was experiencing – as a caregiver, a supporter, a cheerleader, and as someone who just tried to make his life easier. The anecdotes about the two of them were touching.

So I was stunned, when I got to the entry he wrote after he’d gone through all the treatments and was, at that point, disease-free. He said he and his wife were getting divorced.

I think in most cases, as it has been in mine, going through all the difficulties that myeloma can bring into one’s life, and into the caregiver’s life, helps bring people closer together.

But the blogger’s experience was a revelation to me. My initial thought was that after going through all they had together, how could they in the end go their separate ways? But clearly, if you are not careful in dealing with the ongoing stress and disruption that myeloma care and treatment can bring into a couple’s life, you run the risk of being pushed apart.

What you are reading here is something I’ve tried to put into a column on several occasions and not felt that I’ve done the topic justice.

In reading back some of this piece, I’ve thought that some might see it as a bit dark and depressing. I don’t mean for it to be that way at all.

What I want to convey is the sense that not only are those of us with myeloma indebted to our caregivers, but we need to really appreciate what they are going through.

The road they are on can be a lonely one, because even with whatever support they have, they can simply be overburdened both physically and emotionally at times.

And it can become too easy to take our caregivers for granted.

As myeloma patients, there’s a danger that we will turn inward as we devote ourselves to getting through the moment’s particular treatment, or dealing with some barely tolerable chemo side-effect or disease symptom.

Instead, we should be doing just the opposite. At those moments when we think we’re going through a particularly difficult time, we should be looking outward and letting our caregivers know how very much we appreciate that they are here for us.

Chances are at those moments, what our caregivers are going through is much harder than we imagine. And at the same time, they are trying as best as they can not to show it.