You Have ESRD, it Doesn't Have You

Almost all the people I see in the waiting room at my dialysis clinic are at least 20 or more years older than me. In the last year I think I have run into one other young person, younger than me actually, who was just getting started with Peritoneal Dialysis.  The last year, since I started PD has been a huge adjustment period for me and my family. Even though I was diagnosed with IgA Nephropathy when I was in my twenties, I've never been the kind of person who visited a doctor frequently.  Suddenly though, I found myself having to carve out time twice a month to go to the clinic for labs and doctor visits.  I often have to call to reschedule, I sometimes show up late and there have been a few times that I've gotten my appointment dates confused or shown up on the right day at the wrong time.

November 2013--One of my "rescheduled labs" days.

The  nurses at my clinic aren't very happy when I reschedule or flake out on an appointment.  I understand that it makes their lives more chaotic when patients can't just show up when they are scheduled, but it seems as though the expectations put on younger patients aren't always so realistic.  Unlike most of the people who sit in the waiting room with me every month, I have a seven year old kid at home.  I have a part-
time job, two adult daughters who still depend on mom here and there, and I stay fairly busy with other pursuits.  Especially during the summer I like to be outdoors, camping, hiking, swimming...You name it, so with my life so full of living most of the time, I really need the clinic to show me a little flexibility once in a while without scolding me for not prioritizing they way they think I should.

I tend to become a fairly impatient patient when the clinic treats me as if dialysis and clinic visits should be the center of my universe.  I don't have to tell other people who have ESRD that if you're not careful, you'll become this diagnosis instead of being a person who has this diagnosis. You absolutely must hang on to the parts of yourself that you value most.  For me, that means being  a mom before anything else.  It means being able to write, to explore the world around me, to interact with people as much as possible.  Whenever I have gone through rough patches, when I'm too fatigued to function normally, when my iron gets too low, or when I've had bad nights on the machine with painful drains, I have ended up terribly depressed.  I start to feel like a slave to my body, as if it is somehow sabotaging me on purpose.  I start to feel like less of a person and more like a malady.

If I don't focus on who I am and what makes my life feel more complete, I lose track of my identity altogether.  I don't feel feminine or pretty or in any way attractive.  I don't feel like I am good at anything. I feel like I must be a terrible friend who is so consumed with her own problems that she can't be there for the people who matter most to her.  I start to get so down on myself that before long, I am a big bundle of anxiety and depression.  The more negative self-talk I engage in, the more convinced I become that I should just stay away from everyone.  Isolation actually becomes easier than reaching out.  Hiding away, focusing only on my shortcomings becomes a way of life for a while.  Let me tell you, I hate getting into that spot, but once I get there, I find it incredibly hard to dig my way out again.

Quality of life should be the most important goal for us and it should also be a goal that is important to our healthcare providers.  Sure, I could just let my life start to revolve around hooking up to a machine, ordering supplies for dialysis and waiting around for deliveries.  I could keep every single clinic and lab appointment without ever asking for a change, but then I would miss out on a lot of the things that make my life richer and more fulfilling.  This disease robs us of so much already, why let it rob me of time I could be spending seeing my son sing with his class at school?  Why should I miss out on a once-a year camping trip?  Is it really that much trouble to ask for an appointment change here and there just so I can hang on to  the parts of my life that have remained "normal" and reassuring?

I know I'm not the youngest PD patient ever, but I see a pattern with healthcare providers that is troublesome, in that we seem to all get lumped in together as ESRD patients and not individuals.
It is easy to get frustrated when the medical profession has such a general perception of ESRD patients.   Either we are "young and healthy" because we don't look sick, or as is so often the case with our dialysis clinic staff, we are sick people who have nothing else to do but be sick.  The reality is most of us, especially the younger of us, fall somewhere in-between those two constructs.

I am a person with an illness, yet I am young and aside from renal disease, I am reasonably healthy.  Every other physical problem I have exists only because my kidneys don't work.  I realize that isn't the case with everyone, but then everyone is different.  Your disease, your life, your health is a very personal, individual experience.  None of us should ever feel as if we are not living up to the expectations of our nurses or doctors because we aren't being "sick"enough.  We should never feel the need to apologize for having a life and identity that is not defined by ESRD.  These people only know us in context with our disease, but if they took the chance to listen, to understand us, they might realize that there is so much more to our lives than merely surviving to see another day.

I urge you to talk to your dialysis center staff about your life.  Tell them what you do with your spare time, let them know that you have people, responsibilities, hobbies and joys in life that are more important to you than anything else.  Remind them, by being yourself, that you are not your disease.  The only way we can open eyes is through authenticity and openness.  I remind my clinic staff that I am a busy woman.  I tell them about my camping trips and excursions through the woods.  I tell them I go wading in the river, and that I hiked up a mountain.  They are starting to know me well enough now that they are curious about what I've been up to whenever I call to reschedule an appointment.   While they are no less annoyed with me, they've come to understand that I am not slowing down just because I have a diagnosis for which there's no cure.

We only get one chance to live. We should never feel apologetic for giving it our best shot.  By all means, get to your appointments every month, but never feel bad if you need to reschedule for an important reason. Never mind whether it seems important to anyone else.  This is your life, your experience, don't let ESRD take anything away from you that you can still hang onto, and don't let your clinic pressure you into feeling as if you are neglecting your health if you reschedule from time to time.  A healthy person takes care of the physical, mental, spiritual and emotional parts of himself.  The results might not be measurable on your monthly labs, but you will feel the difference, and that's what matters most.