As I meet and read about other kidney disease patients one of the chief complaints I hear is that the people around them have a hard time believing they’re dealing with a serious illness. It’s not that they don’t care, it’s just that they expect people with chronic diseases to look well, more sickly. Some patients battling kidney disease have a rather unique problem in that they look a little too good.
So this is geared towards those of you with loved ones, friends, and associates with one of the many forms of kidney disease. I’m hoping you’ll come away from this with a better understanding of how this disease impacts a patient.
Chronic kidney disease is a funny animal. While there are some similarities in the symptoms that people share at certain stages of the disease, there is also a vast disparity in how it is experienced by many. It seems no two patients are exactly alike. Kidney disease can present as dark circles around the eyes, bloating, edema, thinning hair and many other physical changes. In many patients it just doesn’t show at all. Everything appears fine, even when there is much more going on beneath the surface.
Unfortunately the lack of visual symptoms comes at a price for a lot of patients, especially school aged children and teens. If you know someone with kidney disease and you find yourself uttering these words (or ones similar), you need to pay attention:
- “But you look fine.”
- “It’s not like you can’t just get a transplant.”
- “It’s all in your head. You’re just making yourself tired.”
- “You’re just looking for attention!”
I have talked to enough patients and read enough testimonials to know this is far too common, even coming from well meaning friends and family. It really has to stop.
Some of this is born out of frustration. Caregivers and loved ones are also impacted by kidney disease and such criticisms can be a way of expressing that. But I think this is in greater part a product of misunderstanding.
It is true that many CKD patients don’t look any worse for wear. For some of us, we even feel ok up until the point of requiring dialysis. Even if a kidney patient doesn’t have the shift in appearance that people suffering other diseases often do, it’s a misleading indicator. Beneath the surface there is a lot going on physically and emotionally. Cramping, muscle aches and especially back flank pain are very common symptoms. So is gout which is extremely painful.
Fatigue – mental and physical – is a very real thing for people dealing with kidney disease. A person with reduced kidney function is not filtering enough toxins out of the blood. This adds an extra burden to the body and one of the ways this presents itself is in the form of fatigue. It makes you tired. For a person with children or a lot of responsibilities, the world has a way of speeding up around them.
We haven’t even gotten into the anxiety that comes along with the diagnosis. The stress of having to upend your whole life, the potential loss of a job, not being able to function at the same level as before, the potential loss of independence, and the fear of death can be extremely overwhelming. Just getting regular lab results suddenly weighs much more heavily than it ever did before.
So when a healthy looking patient tells you they are in pain or worn down, it’s typically because they are. A common theme of mine is this:
Kidney disease doesn’t exist within a vacuum.
Something came before that led to this, and this is going to result in something else down the line. Dominos are going to fall leading to few different potential outcomes with the one common factor among them being that the patient will be dealing with chronic kidney disease for the rest of their lives. No matter what happens, a kidney disease patient will ALWAYS be a kidney disease patient until there is a cure.
This is the reality: Some people won’t progress to end stage and will live normal lives being able to just monitor the disease going forward. Others will need to go on dialysis and will have to stay on it for the rest of their lives. Others will be fortunate enough to be candidates for transplant. Some will get transplanted before even having to go on dialysis while others will have to spend at least some time hooked up to a big mechanical kidney. Others, especially those at advanced age or with other serious accompanying conditions will give up hope and just not do the treatment.
So while your loved one looks fine, this is what they are dealing with on a daily basis. Even if you can’t see the aches, the cramping, the fatigue, or the anxiety, trust me, it’s there when they say it is.
At this point you’re probably (hopefully) wondering what you can do about all this.
You can’t cure the disease but what you can do is learn how to be a vital part of the support system. It starts with understanding that this is also your journey. Chronic diseases don’t just involve the patient, it pulls in everyone in their orbit in some way.
Your job as a friend, spouse, relative, or caretaker is to be educated. You don’t have to be a medical professional – most of us aren’t. The Internet is loaded with patient stories that echo yours in some ways. Read up on what other kidney patients are going through and draw parallels to your situation.
Find out what other resources are out there. There are organizations that do a really good job of pulling patient support groups or peer mentors together (see the Organizations page here on this site to get started).
Most importantly, try to see this situation from a patient’s eyes. Instead of being frustrated, take a step back. Understand that when they are angry or depressed, there is a lot going on beneath the surface and they are unable to articulate that for you. This is where patience and empathy are critical. You don’t have to know how it feels and you most likely won’t. Instead, learn to trust their experience. Be patient. Listen. Adapt. And finally always strive to be a source of optimism when they need it most. You’d be surprised how much of a difference you can make!