The 5 Medical Roles I've Taken on as a Patient With Chronic Illness
As a chronic illness patient, I’ve had to take on several roles that I am frankly not qualified for. Every chronic illness patient I’ve talked to says pretty much the same thing. We end up taking on roles that ideally would be done by medical professionals but due to the lack of primary care physicians (PCP), and the pressure on doctors to see an extraordinary number of patients a day the patient is the only person left to take on these roles.
First is the role of triage. Due to the nature of postural orthostatic tachycardia syndrome and joint hypermobility syndrome, I always have strange things going on inside my body. I am constantly monitoring these symptoms and assessing the urgency of them. In one sense everyone does this. Each person decides when to go to the doctor about a problem. I think the primary difference in the chronic illness community is that we decide not to go to the doctor fairly often. In the healthy population, a person would usually go to the doctor for any persistent symptom. In the chronic illness community, we have to prioritize, and sometimes we get it wrong.
I find that I am usually keeping an eye on a dozen or so symptoms a day. That’s every day, even the good ones. I’m watching for any symptoms that are at an alarming level or combinations of symptoms that could mean there is something direr going on than my normal health problems. I can sometimes use my symptoms as clues to correct course. For example, if the clues my body is giving me indicate dehydration then I can adjust my water or electrolyte intakes. The amount of energy and attention I have to give my body on a daily basis to do the work of triage often feels like a full-time job.
I don’t know any healthy people that check their vitals on a daily basis. I am checking my pulse multiple times a day. I even have a couple songs I can sing in my head with known beats per minute to get a very quick estimate of my pulse. I often check my blood pressure or temperature. I also frequently find myself moving a joint around to make sure I don’t have subluxation. In fact, generally speaking, if I have joint pain and I can’t identify a different cause it’s probably the result of a subluxation. The people around me usually don’t even know I’m doing these things. Even my husband, who is more aware of what I go through than most people, doesn’t usually notice me checking these things. One night I put a rib back into place while out at a fancy restaurant and no one even noticed. I then triaged myself to decide if there was any further medical care needed at that time. All without disrupting the conversation at the dinner table.
2. Head Researcher
Another role I have found myself having to take on is that of Head Researcher. My husband gave me that title as a joke but it fits. Being able to research medical things and find accurate information without getting totally freaked out is a skill I had to learn over my years of undiagnosed illness. This isn’t unique. Most chronic illness patients are forced to develop this skill just to get correct diagnoses and to find treatment options.
Mine isn’t an uncommon story but I have often figured out what is going wrong in my body and then take that information to my doctors for them to assess and either confirm or deny. I’m often right. I also am usually the one researching new treatment options. I keep up on research studies and suggest treatment ideas to my doctors. The reality is that there is no Dr. House, or if there is he’s not taking new patients. I have to be my own Dr. House.
3. Medical Coordinator
I’m also my own Medical Coordinator. By this, I mean that I am the one who is keeping all my doctors up to date on my health. I am the one who is deciding when to go to a new specialist. I am the one who does the legwork to keep it all organized. I think ideally this job would be done by a PCP, but again, there aren’t enough of them and they don’t have any time for this.
4. Medical Records Editor
The next role, that of Medical Records Editor, is not one that I have a ton of personal experience with but I have several friends who have had to do this. When a person has an undiagnosed illnesses, sometimes incorrect diagnoses make their way into their medical records. This was super problematic when insurance companies could deny coverage for preexisting conditions because people would get denied for things they didn’t even have. Incorrect medical records can also be a problem if you have a doctor that you butt heads with. They might unfairly label you a difficult patient or imply in their notes that they think your symptoms are all psychosomatic. If this happens then future doctors might not give you the time and consideration that you deserve. Luckily as the patient you are fully entitled to edit your medical records to correct such things, though I’m told this can be a long and complicated process.
The last role is that of Dietician. The main reason we have to take on this role is that many insurance companies won’t cover dieticians. I remember several years ago, at the worst of my uncontrolled IBS, I was trying to get my insurance to cover a dietician. Despite all my gastrointestinal problems and my history of anorexia, they would not cover any visits with a dietician or nutritionist. That’s just insane. If they had known how often I needed medical care because I wasn’t able to feed myself correctly they would have seen that covering someone to help me figure that out would save them tons of money.
As a result, I had to figure it out on my own. I did tons of research, tried every kind of elimination diet I could find. I eventually was able to identify several things that were triggers for me but even then I was still struggling quite a lot. Eventually, my gastroenterologist recommended some tweaks to my diet that ended up being the missing pieces but that took six years from the time I became seriously ill with IBS. I’ve always wondered how different that story would be if my insurance would have covered a dietician for me in the early days of my IBS.
All of us in the chronic illness community have taken on at least some of these roles. It’s hard work and it takes up a lot of time but we don’t really have a choice. I am hopeful that the nature and practices of health care will change significantly in my lifetime but for now, I will continue to triage myself, research new treatments, coordinate and edit my medical records and be my own dietician.
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