On Complaining
-Written by Jeanine Cohoon-
“Some changes lead to seriously bad things, and that one little change is the only way they can catch it. I was just a LITTLE dizzy-I wasn’t going to say anything. I have no idea if I’d be dead by now if I hadn’t complained and gotten an MRI, and rushed treatment. ”
Jeanine often dresses up in different characters before being treated for Stage 4 MBC.
Lets talk about Complaining.
Its really, REALLY hard.
To complain to a position of authority on knowledge about something you SWEAR is stupid. Being stupid is uncomfortable and shameful, and you’d rather leave things in the hands of those better trained, and who are better at taking charge. The issue with feeling this way as a patient, is that your authority figures are doctors. They are highly knowledgeable, sometimes egotistical, sometimes SO NICE and you don’t want to offend them. Sometimes they are busy and distracted.
The issue is, the only way they know how to do their job is if you tell them everything they need to know. If something hurts, or feels wrong, you’re absolutely right, you ARE coming from a position of ignorance, and It’s difficult to approach that. You’re NOT an oncologist, or a phrenologist, or a cardiac surgeon. You’re a normal person, paying this extremely skilled mechanic to fix your meat jalopy, and if you don’t tell them where the trouble resides, they don’t know what tie rod to replace.
When something hurts, I complain. When something changes, I complain. When Something DOESN’T hurt, I complain. When I feel dizzy, sick, tired, moody, distracted, woozy, constipated, nauseous, snack-y, afraid, unsafe, irritated, curious, I COMPLAIN. If it’s nothing, they tell me, and they tell me why. If it COULD be something, they know what to look for.
Last year, my first dose of Taxol chemotherapy came with a full dose of Benadryl. Most people have allergic reactions to Taxol, as its suspended in a yew tree extract that causes reactions. First, I asked why, then I asked if the full dose was necessary as I usually don’t need that much, but I DIDN’T complain.
I regret it to this day.
I could’ve taken the first, and then taken the second if something came up. I didn’t have a reaction to the chemo, but I sure as SHIT had a reaction to the Benadryl. Suddenly my head started spinning, I almost fell out of the chair, and my eyes dilated. Had I complained, I wouldn’t have scared the crap out of everyone in the lab who thought I was going into anaphylaxis. After that episode, I received a more appropriate dose of Benadryl, and ended up doing fine, only sleepy.
When I met my doctors, I told them EVERYTHING I felt, heard, researched, and gave them the full basis of what my NORMAL is. If something changes, they need to know what changed. Some symptoms can persist for years. If your normal is unhealthy, defining it for them is the only way they might know. Some changes to your normal during any treatment can be a GOOD thing, and it tells them they’re on the right track. Some changes lead to seriously bad things, and that one little change is the only way they can catch it. I was just a LITTLE dizzy-I wasn’t going to say anything. I have no idea if I’d be dead by now if I hadn’t complained and gotten an MRI, and rushed treatment.
When we cared for my sick mother in law, she did not complain. SO many times, she had to be rushed from our home to the hospital, too late for early care, too late for a quick check up and fix. Too late to avoid being admitted. Too late to avoid being sent to the ER and kept for several days. Each of these events took away more and more of her ability to recover, her “cush” as I called it. Among her many health issues, she also had renal failure. Kidney damage is not repairable, and impacts all of the body’s systems. Eventually, it lead to her death, and I regret every day she didn’t complain.
Voice. Question. Try to understand. Advocate for yourself.
No matter what, if you’re in a situation where you’re on the back foot, and you don’t know or understand everything, voice that lack. I always tell my employees that letting other people think you’re stupid but nice is a wonderful thing. The worst thing that happens is they feel obligated to fix you.
Thanks!
