I know my expectations for my physicians and am fairly certain of my physicians’ expectations for me. But what about my personal responsibility to other patients?
There was a time in my life when I was less likely to be a persistent patient. When my thyroid treatment stalled, I jumped out of the car and hitched a ride. When my mystery leg problem became too much of a puzzle, I took that as a free pass to denial. At the time, I thought I was only harming myself.
Could it be that I was harming other patients?
In light of some recent reflection, I believe that we can harm other patients by not
Sorry! Using a robo patient as a stand-in is not responsible.
following through and being persistent with our health problems. Why? Because if my medical problems are puzzling, chances are there is someone else out there, probably even a family member, who also has a puzzling medical problem. If I don’t follow through, I don’t give my physician the chance to solve the puzzle. If I did give the physician an opportunity to solve the puzzle, that physician would gain experience that would be useful with future patients and I would gain knowledge that I could share with other patients, particularly family members.
How did I arrive at this viewpoint? A conversation with my sister. My sister is 13 years older than me and I know she has been on thyroid medicine in the past. We were conversing yesterday when I remembered to ask about her thyroid treatment. She stated that she was back on thyroid medicine for a hypothyroid but she doesn’t even know if it helps. I let her know that there may be more to her thyroid story. I told her that I have Hashimoto’s thyroiditis yet it was only recently diagnosed because I do not test positive for the Hashimoto’s antibodies. As my sister and as a fellow member of a family with a long list of various autoimmune conditions, I recommended that she talk to her doctor and let the doctor know about my diagnosis. Her response? Complete disinterest.
Now get this. My sister let me know that she has only one possible “real” health problem. It’s that her body won’t cool down. I let her know that thyroid and other autoimmune problems can impact body temperature and our heating/cooling system. She said, “No, I’ve searched and searched and there’s no explanation for this.” I offered encouraging words and suggestions on how she might mind help for the problem. Then, she dropped the proverbial bombshell. “It’s so bad that I wear ice packs under my clothes.”
Wearing ice packs under your clothes is not normal. If it was, all clothing would have built in ice pack pockets.
But she wasn’t having any of my advice. “I don’t have time to go to doctors. I don’t want to run around here and there.” You have time to make sure you’re stocked with icepacks but don’t have time to find out what’s wrong?
That’s when I realized – not only is she letting herself down, she’s letting me down. Maybe there are some answers in my sister’s problem for me. And not only is she letting me down, she’s letting other patients down.
Beyond my sister that I mentioned above, I have other members of my family of origin that I believe have clues that can help solve my medical puzzle. They all rarely seek medical care and rarely follow through with anything. As for me? I’m now on a mission to help solve the medical puzzle that is me. If not just for me, it’s for my son who is already showing autoimmune symptoms. And if not for my son, for some other puzzle out there.
So, are you a responsible patient? I’d love your feedback! Leave a comment or email sickysickerson at gmail.
Filed under: Uncategorized Tagged: | autoimmune, chronic illness, doctor patient relationship, health, patient responsibility, thyroid
Phew. That’s a tough question.
I used to be more willing to let things go if they weren’t easily solved. My knee hurts? Let’s do x-rays and maybe a few weeks of PT, and well, I just don’t have time for anything else so if it doesn’t get better, that’s just life with a bum knee.
I think for me (and maybe others) there’s a threshold that a problem has to reach before it’s made into a priority. Even a persistent problem can be easy to ignore if it’s not too intrusive and doesn’t get too much in the way of other things we want to do.
I’ve had similar issues with family members about things that have come up for me in the past few years. After I learned I had a tethered spinal cord, and learned it’s a form of spina bifida, and mentioned it to immediate family members, I discovered that my mom has been diagnosed with a mild case of spina bifida. She never thought to mention it to any of her kids. I told my sister about it thinking she’d want to mention it to her kids as they grow up, and she just shrugged it off and said they haven’t shown any signs of a problem. Um, yeah, that’s great, but it might be important for them to know if/when they decide to have kids of their own!!
Like you, I have a young child, and part of pursuing an diagnosis for my mystery illness is to get an idea of what kinds of genes I might have passed on to her. (Luckily, she so far seems to take after her dad and be VERY healthy!! I just hope it lasts …)
As always, you make me think. I love that about you!!
“Wearing ice packs under your clothes is not normal. If it was, all clothing would have built in ice pack pockets.” LOL, seriously. I do wish they did though!
To answer your question: I think I’m an overly responsible patient. And yes, my sister is similarly poor at the medical follow through.
I was on a synthetic progesterone for a while some years ago for endometriosis. Slowly, I started developing shortness of breath. It was so gradual that at first I didn’t notice it. When I did notice it, I chalked it up to being a smoker (ugh, yeah) and to having been out of shape due to having had a hard to treat Lyme infection. But it got worse, to the point where walking a few feet would leave me gasping for breath, where I couldn’t deliver a lecture without stopping in mid-word to huff and puff. Long story short – one stumped pulmonologist and cardiologist and one fired primary care doctor later, it turned out it was my hormone treatment. Yes, it’s used as a respiratory stimulant for people with sleep apnea. Well I’ll be….
I stopped the hormone – slowly the respiratory problems abated. I printed out the articles on it for my (new) primary care and my gynecologist. I figured they should know, maybe they won’t remember the details but if some other patient comes in with similar complaints, maybe it will ring a bell. Maybe it’ll save someone the months of frustration and worry, not to mention the invalidation of poor doctor attitudes.
Wow… what a bombshell! The possibility that it could be something genetic changes EVERYTHING! And certainly could help doctors choose their course better. That has to be very frustrating to not have her want to find answers. Sounds like classic denial.