Part 1 - Claire’s story
Claire Sachs is a strong and resilient woman with a positive mindset. Her stories are truly inspiring for anyone, especially for those who are going into healthcare.
Right now, Claire balances about 13 different conditions, and most of them are related to diabetes. Some of the conditions do not require daily attention, while others do. She compares her experiences of dealing with her conditions as going to college and high school, “you sort of figure out what you have to read versus what you can get away with not reading.”
“It started with something really big, which is bacterial strep meningitis, which is the one that kills people, the one that everyone has to get vaccinated for now. [...] I had brain damage, and I was in a wheelchair for a year and a half, and somehow my body recovered. [...] You know sometimes the body compensates when it’s injured, where the part will sort of pick up the responsibility. I think that’s what happens, but I can’t prove it.”
“Then eight years later I got diagnosed with type 1 diabetes. I was so angry that I decided that I knew better than everybody else, so I was basically noncompliant for six years. And being non-compliant when you’re diabetic often means an eating disorder. There’s an eating disorder called diabulimia, that’s very specific to diabetics, type 1 diabetics in fact. That’s part of what my noncompliance was. But I started getting serious complications when I was twenty, so that was really scary cause part of it was peripheral neuropathy - people call it diabetic nerve pain - I was starting to lose the ability to walk again. And since I already had dealt with that, I was like no, we’re not doing this again. It sort of scared me straight, but getting serious complications that young was what put me on the straight and narrow. But, diabetes is one of those diseases that even if you straighten out, it comes back ten years later and sort of bites you in the butt.”
“I got to stage three kidney disease by the time I was twenty-nine. [...] My body is weird. It doesn’t obey the rules that people learn, so my last set of labs, which was just a few days ago, says I’m actually almost near stage one - I’m three points away from stage one. Kidney disease never gets better, so the fact that I’ve gone from stage three... There’s one [test] called TfR [The soluble transferrin receptor-F-Index], and that’s the snapshot of many filters in your kidneys work. When I was first diagnosed, that number of 45, and as of a week ago Friday, it was 77. The best thing that we can figure out is that I'm really sensitive to dehydration. But there are a lot of other complications. I have nerve damage in my stomach. I have something called homeopathy, which affects your nonvoluntary system. It affects things like internal temperature control. And when I stand up too fast, my blood pressure will drop.”
She has been actively involved in the community as she shares her stories through blogs, with Georgetown Medical School students, and with nonprofits.
“The reason I started the blog was to be honest, for the first decades, like a few decades of my life, I really didn't want to talk about this because I lived it read it left it to me. And I just felt like, you know, my professional life. I wanted a break. My sister was not related to healthcare at all. And then one of my old doctors invited me to speak to about 400 Georgetown students. [...] It was the first time I ever realized that all this stuff that I didn't want, but that I had to be used to help people. On Thursday I started working with nonprofits and because of the pandemic, I got laid off, which is fine. But I wanted to make the change. I might as well do it now, probably something permanent: that's going to be health care, probably health care policy related because that's my profession. Maybe if I can't get that, I will want to stay, which I'm sort of doing it the same time anyway. So we'll see.”
Her experience with doctors at a young age was not easy, which led her to realize the importance for doctors to treat their patients as equals and that no case is the same.
“Once you get sick like that, you become a control freak. So in the beginning, when I wasn't an adult, I had not very good doctors. The first one for the diabetes would send me out of the room to talk about care with my parents. I was already 14, and with the meningitis, I already knew too much medically. It was a big mistake. And he did a couple of other things that indicated he wasn't listening. So I got very defensive. [...] Yes, my parents have a role. But the biggest role is mine. [...] Yes, it needs to be an equal partnership, but only I have the ability to drive the plane into the ground.”
“As I got to be older, I chose a doctor that I was very, very lucky to choose. I saw him on TV, and he had inhaler insulin, which was very technologically advanced at that point. [...] I went into that first appointment, and I was ready for a fight, right? Because I hadn't had very good experiences with doctors before that. And I basically walked in after the greetings and told him, I'm going to be a terrible patient, not going to listen to you, but I still need someone to order the labs and go over stuff with me. Instead of pushing back, he was just like “okay”. So how do you fight with someone who's not willing to engage? That was really life-changing for me. So, I can depend on him. Even now, he doesn't treat me anymore, he's the one I do the to talk with every year. But if something new comes on the market, I can ask him what is a legitimate advance or what about whistles, and I don't need to worry about it. If there's something in the study, I don't understand, he'll tell me. And he helped me build this network of doctors that will treat me as a peer. So I'm not afraid to ask whatever is. If I forget a medical appointment, I can just email or call and be like, I need someone to go over this with me.”
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