Coping with Chronic Kidney Disease: “What Are Your Goals?”
Over the past 6 months I have collaborated with some partners in a research project that looked at health priorities from the perspective of people with chronic illness. Following a survey we picked a number of people who responded to interview in order to get some more in-depth answers. I analyzed the results with another professional and some experienced chronic illness advocates and we came up with some really interesting results that will be published at a later date. The conversations reinforced some things I have learned from talking with others about life with ESRD , which I’ll elaborate in this blog post.
Treatment options and modality choice mean less to us than the need to sustain a certain lifestyle. As long as we can have a good life when we are off the machine, it doesn't matter what treatment we do. All of us have a preferred modality that we like, but at the end of the day we want to have a good quality of life in between our treatments. The same goes for people with other chronic illnesses which is why it is very important for us as patients to stand up to our healthcare professionals and tell them this important message: quality of life is always more important than minor details about optimal health.
So what is Quality of Life (QOL)? I think there are as many answers to that as there are people working with it. It is such a fluffy concept because it encompasses virtually everything having to do with being a human being and living one's life. But there are some core components that seem to encompass the things that matter to most of us. This is by no means a “be all, end all” way of looking at QOL; it is just my thoughts of what it means for ESRD.
At the core of QOL is physical wellbeing. Nobody can have a good life unless they experience some sort of physical wellbeing. Regardless of how sick I am on paper, I want to be as well as my illness allows. So it is important to do what I can to keep my body well and fit at all times. Physical wellbeing is not about the absence of illness or pain: it is about getting to the point where the chronic illness is the least noticeable and we are able to pursue other things in life instead of feeling miserable all the time.
Beyond being physically well, quality of life is about our social role as human beings in fulfilling our responsibilities, and sustaining relationships. None of us live in a vacuum; we are all responsible to others, just like they are responsible to us. This is all about how we act as partners, parents, colleagues, brothers, sisters or whatever role we fulfill, sometimes because we want to, other times because we have to. Those who have children know how being a parent is the most meaningful responsibility in the world. Some feel their career is so important nothing beats it. Being respected as an equal adult is the critically important for many, part of being respected is being able to fulfill our responsibilities toward others.
Similarly we all have people who mean something to us and to whom we mean a lot. I would say everyone on the planet needs some kind of social life. Even if we are recluses by nature, there will still be those with whom we interact to some degree. Regardless of how much our chronic illness affects us, we need to have a social life. One thing I have heard from many with chronic disease is how they did not want to be seen as “the sick person” in their circle. It is a constant struggle for many to be viewed as “different” or “less than” by their peers or treatment teams, and it can be hurtful it was when someone feels pity.. Most of us want to be regarded as normal human beings who happened to have a chronic illness.
Encompassing all other aspects of life quality is the need to take ownership of one’s health: when we are able to own our health, we are in control of our lives to the greatest degree possible. Only by owning our health can we control our physical wellness. And only by owning our health can we be responsible and maintain our relationships. Having a chronic illness we are faced with a choice:
We can sit back and let our healthcare provider (HCP) decide everything for us.
Or we can take charge and own our health.
The first reaction is that of the typical “compliant” patient. The other reflects the patient who takes ownership of their health. There are degrees in between, and I could write an entire blog post just about that spectrum. Maybe I will some other time.
Owning our health means being in the driver's seat. It means taking control of our bodies and our health situation. It means having a positive working relationship with the HCPs where we listen to them and they listen to us. When we own our health, the risks of limiting ourselves and sacrificing personal goals because of health issues are much smaller than if we let the doctor decide everything. Doctors and other HCPs are not the ones living our lives. They don't know our priorities and wishes unless we have a working relationship with them. They are blindsided if we don't take an interest in our health situation and can explain to them what is going on with us.
How can we gain ownership over our health and our treatment? There may be a progression that people go through on the road to becoming a truly empowered patient: any treatment for a chronic illness starts out as some sort of regime, whether it is taking our medicine every morning and night or it is going to the clinic three times a week. Learning to live under new and often limited circumstances is difficult. Many never progress from this stage. Being in-center is a great example of a regime; the very nature of everything following certain rules. Everyone has to follow the same rules regardless of individual differences. Most often we don't get to have a say in our treatment that is done assembly-line style. This way you are ruled by your treatment instead of gaining some sort of rule over it.
I also know people doing home dialysis who treat it as a regime, especially those who let their care partner do everything because they are not interested in their treatment. It is very difficult to be interested in your treatment if it is done to you and not by you.
We have other regimes in CKD. I have seen young people lose transplanted kidneys because taking their meds felt like a regime to them. Whenever someone loses their kidney because of poor adherence it is sad. But I truly feel it is not entirely their fault. Someone failed at teaching them about owning their treatment, making it theirs instead of something they do only to satisfy their HCP. Everyone—and especially young people—wants ownership of their lives. And for someone needing to take medicine to survive, that ownership encompasses taking their meds.
For many treatment as a regime is all they will ever experience. These people will not own their care. Care will always be something that is done to them; something foreign that has entered their lives.
The first step in owning our health is looking at treatment as a something we can learn. Every person on the planet has routines that they have learned one way or another. We eat, we go to the bathroom, we sleep, we wake up. Most times we barely even notice them unless we stop and think about what we are doing. Making our treatment and our medications a routine will help normalize the illness experience and make it less of a burden. I think it's important to stop once in a while and think about how we can make all aspects of our illness something natural.
Once our treatment becomes as natural as sleeping or getting up in the morning, we have reached the point where it becomes a natural part of daily life. When we have accepted the illness and its treatment as something we have to live with for the rest of our lives, it is no longer a burden. That doesn't mean it's enjoyable. It doesn't mean we have to like it. I don't enjoy getting up in the morning but I do it every day. Once I am up, things are fine. The same goes for my treatments. I hate going on the machine, but I do it because I know it's the only way I am going to be able to accomplish what I want. It's the only way I am going to feel good.
Making our healthcare needs into habits will greatly ease the burden of having a serious chronic illness. It might be difficult to fit our illness into our lives but when we manage to do so, our lives become much easier.
I am not trying to imply that dialysis is not an enormous burden on the individual. I have been in a wheelchair since I was 10 years old, but when I started dialysis I realized I had never felt as disabled as I did then. I still feel dialysis is more disabling than living in a wheelchair! But, I have managed to make it part of my life. And, listening to others talk about chronic illness and how they cope gave me new perspective to life ESRD.. Now I have told you about some of my insights and I hope you can use them in your own life—whether you are a dialyzer, a care partner, a professional or just plain curious.
Aug 18, 2016 10:21 AM
Aug 12, 2016 9:00 PM
As you put it so well, if you want to be treated like an independent person and not a victim, then act like it.
Aug 13, 2016 10:48 AM
So when we can pass some of that attitude and the knowledge we gain to others it makes me happy. Whether we do it by being part of studies that eventually might convince a professional or two, or we do it by sharing what we have learned in this and other forums. And when it is read and understood by our peers, it is worth all the time and effort we put into it.
I know you can't help doing this work, just as I can't help it.
That is why I refer to you as my partner in crime. So thank you for being that and keep it up.
Aug 12, 2016 8:06 PM
Aug 13, 2016 10:35 AM
You are a great example of how it helps to fight and do the best one can to own your own health. I am very happy and proud to call you my friend. So when you can use some of the things I say, it only makes me more happy!
Henry P Snicklesnorter
Aug 12, 2016 7:43 PM
If the message contained in this is read, understood and adopted by all, then the world of dialysis will be a much better place.
Indeed, it seems to me to apply to all facets of chronic disease and treatments. This posting should appear on the walls of surgeries, consulting rooms and treatment centres the world over.
Aug 13, 2016 10:32 AM
Your opinion means a lot to me, so to wake up to such kind words from you makes me ecstatic, indeed.
The study was done with people who primarily saw themselves as diabetic. So you are right when you say the results apply to many facets of chronic illness. I tried very much to transfer some of the things having to do with diabetes to having CKD and I honestly found it remarkably easy.
I think we need to start working on some of those aspects that are similar in chronic illness so we can better the lives of many instead of buying into the way it has been done in many (but not all) hospitals for more than a century where these aspects are being treated separately with the result of the same work being done over and over again by different people and with differing results.
Aug 12, 2016 1:54 AM
This thoughtful work of yours from Denmark, and the remarkable ANZ-initiated Song-HD study which is still at present seeking a publication 'home', clearly show how separate our two paths have become.
Enlightened people on both sides of the membrane - your study, Song-HD, and others - have begun to recognise and identify just how the two emphases differ ... but the harder work only now begins: the rapprochement towards a better understanding from professionals of the things that matter (or should matter) most to our patients ... and how these are not what 'we' have always thought they should be ... and a better understanding from patients of the short-comings and/or limitations of their professionals ... and how greater empathy and understanding of each for the other might be brought about.
This blog should be required reading for both: it would help patients understand the traps of dependency and the liberation of self- determination, while showing dialysis professionals that there is more to good dialysis care than numbers on a lab sheet, or a 'compliant' patient population.
Thanks ... and well said. But, the next problem is how to get this widely understood, then massage the two towards a mutually more effective outcome.
Aug 13, 2016 10:24 AM
I am glad you mention the SONG-HD study. I have referred to it many times and my partners have read David Rosenblooms blog post here in this forum about it intensively. So let's hope the results from it will be published soon - just like we are soon looking for an outlet to publish our results in a scientific publication.
Calling my blog required reading makes me both happy and sad. Happy because I am delighted that I have been able to convey something clearly, sad because most of what I say already should be known to both patients and providers - even if only intrinsically or subconsciously.
I will stop here and share some more of my thoughts with the other commenters.