In one of my previous posts I talked about how I was going to be conducting some research. I was a little skeptical on what exactly I wanted to do, but I finally decided on a project, and I actually carried it out just recently.
In terms of process, I originally wanted to interview renal disease patients, but upon finding out how inconceivable that was, I decided to go through forum posts from a website made by a renal help organization called DaVita. These forums are a support network for just about anyone: patients on dialysis, patients with kidney disease who are not yet on dialysis, family members, caretakers, or anyone with questions. They’re split into different sub-topics, for those who are on dialysis, those who aren’t, those wanting to discuss work or insurance or diet or anything, etc.
Since there is a high correlation between poverty and diabetes, and also one between diabetes and renal disease, I figured it’d make sense that there was a relationship between income and progression/frequency of disease as well as general support a patient feels. This also just makes pretty logical sense: if a patient is wealthy, they can afford the best doctors and the best treatment; if a patient is poor, they’re probably going to have a harder time.
Now, before I explain what I’ve found, I want to be clear that this is in no way an accurate depiction of what all renal disease patients believe or anything of the sort. I’m not even sure you can call this a proper research project, considering most usually pull from a huge sample size and are controlled in some way. But hey, I’m no scientist; I’m just a regular gal. Besides, I found some interesting trends and I think they may lend themselves to further (true) research.
The people on these forums are of all ages; all types of disease–those with minimal kidney damage to those in end stage failure; all lengths of experience–some have just been diagnosed and some have been battling for years; all kinds of opinions. In these ways, this forum did have a good sample in that it was pretty diverse.
I went in looking for a correlation between income and support, but after realizing most people don’t casually say how many figures they make per year, I decided to look for other trends I could find and hoped that, along the way, I found something related to my hypothesis.
The biggest thing I noticed after sifting through tens of posts was that so many people here are just looking for comfort, for company, for someone to understand and to help. They can’t find the resources they need so they come here to look. There is no boundary of age or income here. There is no difference between a 20-year-old college student who has just been introduced to the CKD diet and a 65-year-old man who has been on dialysis for ten years. Here, conversation between the two of them is facilitated. Here, connection is encouraged.
I didn’t find anything concrete about wealth as it affects disease or support, and although I still think my hypothesis has some merit to it, it needs a more formal study to reign true. What I can tell you that these patients are lonely. They are struggling. More than the patients, even–caretakers and family members and friends are lost and confused as to what to do. “Ever since I was diagnosed I have been on a downward spiral,” ” I went to a dietitian but it was a waste of my time and money,” “If the government had taken care of me when they should have I probably could have avoided being on dialysis and needing a kidney transplant,” “Why are you so worried?”
Don’t get me wrong, there is a lot of positivity: “I won’t give up,” “Good luck to you and God bless,” “Take care of yourself!”
And advice: “I try to focus on what I CAN HAVE not what I cannot have,” ” Planning is key,” “Keep fighting.”
But I have to question the medical world and ask, what are we doing wrong? Why do so many people feel helpless and that they have a lack of resources? Of course, these forums are for people seeking help and support, and it follows that everyone active will probably show some lack of them, but I didn’t expect it in these quantities or for it to concern even the most basic ideas of the disease.
These are people who don’t get enough information from their doctors, who aren’t sure what dialysis even means, who don’t know what to tell their friends and family, and with more than 20 million Americans battling kidney disease, you’d think medical professionals would have a grasp on things. From everything I’ve seen, though, I have to say they don’t. Patients aren’t being given the tools they need to live happy lives. They have doctors that aren’t helpful enough, they don’t have enough community support, and they are confused.
We need to look at why there seems to be such a widespread lack of support. We need someone with the skills and the resources to conduct formal research. I can’t figure out its cause from a simple experiment, but I can prove that it needs to be found.