Part 2 - Claire's reflection
Every diagnosis is followed by a tough identity change.
“One of the things I've been talking about lately, once I realized it is that with every diagnosis,
especially the chronic and autoimmune ones, you have to change what your identity is. A part of you isn't who you were before. You have to make physical adjustments, and you have to get used to just your body not working right. Lots of people know what diabetes is and how it works and stuff like that, but people around me acted like it was the end of the world. And I think that that really affected me. I didn't know what it was or what it meant. My blood sugar was really high when I went into the hospital because I thought it was the last dessert I will ever have. Obviously, it's not the last dessert I've ever had. You can have basically what you want as long as you make the right dosages for it. But the kidney diagnosis was the first time I was ever scared for my life because when I got diagnosed at that mid-stage, the conventional wisdom was that it was an eventual decline to a transplant. I really didn't want to transplant. I'm so much younger than most of the people who need one. And I just thought, Well, that's it. I'm going to die early. And I did all this to myself. It was really hard to get used to it. And I remember the doctor who I never met before let me go into her private office because I was just crying, and I called my family, and I called my boyfriend who left work immediately to come down. It was very traumatic. It took until my numbers started getting better for me to realize, okay, you're better than stable now. Maybe this isn't going to happen, but most people just aren't that lucky.”
“And I think this is going to sound so weird, but it might be an advantage. I'm getting all this stuff so young, right? My body is still in a position that it can recover a little bit. My nerve problems that I got when I was 20, should not have gone away. But I would say they're 90%-95% gone. Every once in a while, there's this nerve clustered in my left big toe that'll just start firing for no particular reason. But that's like, it, right? And I was paralyzed from the meningitis. And if someone saw me walking down the street, I can feel the residual weakness in my left side, nobody can tell those unless they see me lifting weights, which sometimes my arm just stops like we're done for the day. You can give up. So yeah, it's a balance.”
“There are good things, bad things about it. The good thing is, I know that I am a very strong person. I know I can survive whatever is thrown at me as long as I don't have some terminal diagnosis. Like nothing is a crisis because everything else has been a crisis. So it's given me the resiliency, but it's also giving me the ability to understand that. It can always be worse because I'm not dead yet. And everybody approaches it in their own way. It's a very personal journey, and that's part of the struggle, too, because most of us just want the basic stuff, right? A career, to have a family if we want it, make money, if that's important to you, save the world on some level, an issue that's important to you. But then you get hit with some kind of disease. You have this whole other job that you have to do and can't neglect. You can't be late for that job because it's always with you, or you can't afford to ignore it, or else it’s going to make your life miserable. But you end up with certain kinds of skills, and all of us who have chronic illnesses should be in crisis management.”
Knowing the psychological impacts, listening to music, and being in a garden have helped her throughout the process of healing.
“I think one of the things I need to emphasize is that I've been very lucky to have a therapist fairly consistent since I was 16. Even when I was not using it the way I should before I sort of straightened myself out, it was still the introduction of a tool, a very important tool, to understand that the psychological goes with the physical. The other thing is, someone asked me recently if they thought it would be easier if I didn't know everything that I know. Maybe that is true. But I'm one of those people who, once you know, you can't not know, able to take my time to confront things. My process is kind of like being on a beach, right? You go up and you stick your toes in [the water] and then you run away and you walk up and it's a process. You keep doing that until you're ready to go in all the way. So developing a process like that helps because I can see what stage I'm in and how much longer it will take. As far as coping mechanisms, though, probably my biggest one is music. Who doesn't go to their favorite playlist? I need to sit in a negative emotion or be pulled out of a negative emotion that probably the biggest, especially during the pandemic. I am not an outdoorsy kind of person. Being in a garden or around flowers and plants has also been really calming.”
Having nonjudgmental doctors have also helped her.
“The biggest quality that they share is to be nonjudgmental. If they see that I'm going off the path, it's not a question of should. It's like, what do we have to do to get you to this place. We're going to do it together. This is not all on your shoulders. One of the other things that that first doctor did for me that I'd never experienced before was that I used to cancel appointments if my numbers weren't exactly right. And he kind of rolled his eyes and be like, ‘Come in when your numbers aren't right. That's when we can help you. If everything is good. Then there's almost no point in being here.’ So that was like a change. I'm not going to speak for anyone else, but I suspect I'm not the only one. I'm looking for a safety net when I start to fall. If the doctor is judgmental, I'm going to want to just avoid the safety net and hit the concrete. The nonjudgmental part and the working with me part are the two most important things I would say.”
Besides her doctors, she has also gained a lot of support from her family.
“My family is very small, but I have chosen family where your best friends become sort of that part of your family. So even if you're in a really bad place, you always know that you can go there.”
Though she does not enjoy support groups, she believes that it is helpful to know some people who share similar experiences.
“I don't really like [support groups]. I'm not a joiner. I'm not a big fan of social media. That being said, it is very nice to know a few people with the same disease that you get together in a group and you can just go over the problems and not explain why their problems, because that person already knows, like a handful of other type one diabetic. And it's nice to hang out. Sometimes I was in that being able to look like without the Internet, I wouldn't be nearly as in control, because if I have a question, the first place I go is Google and you have to know how limited the journals are. You have to be able to look at an article or a research study and look at the place where it came from. And now if it's like a legitimate study, if they followed all the rules and everything is as even as it can be and you have to get used to the language. Also, I'm sure, you know, a clinical study and you just know the language around your own disease. Not very confusing.”
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