The title of this post could refer to many topics…love and hate; pleasure and pain; food being pleasantly hot and hot enough to scald a layer of skin off your tongue, thus making everything you eat over the next two days taste terrible (this just happened to me when I tried to eat soup at lunch today).
But today I want to talk about that expression in relation to health. There is a fine line between being a whining complainer of health issues, and being so much of a trooper that people forget you even have health issues and lose all sympathy. Of course I speak of this in relation to my own health problems, but I’d like to first talk about a colleague of mine who has a wife undergoing treatment for breast cancer.
He told me that she’s been in a really bad mood lately. She’s just over halfway done with the second (and hopefully final) phase of her chemo treatments. In the mean time, she’d come down with some sort of respiratory illness (not serious, thankfully) that was causing coughing fits and sleepless nights. She was also having trouble breathing. This is a woman in her early 40s, who is the mother of two young children, who also works part time as a lawyer a few days a week. She’s been trying to keep up with her days in the office through her treatment. I think this was a source of frustration for my colleague, because he can see her getting so close to being done with the worst of it, and does not want her to make any moves that jeopardize her health any further. Which I get, and makes all the logical sense in the world. But then I think about it from her side. She does not seem the sort of person to sit around and feel sorry for herself. She’s trying to keep herself and her family going as though nothing is really wrong. It’s exhausting, but I don’t blame her. She’s being the ultimate fighter in trying to go along in the “business as usual” mode. With all of that, something he said made me think that she is still looking for a little bit of leeway and understanding because of her current health problems. And I’ve gone through this – by pushing yourself to be strong and do more than is medically recommended, you somehow give up your rights to people treating your illness with any amount of sympathy (when really, they should be giving you more). Instead of saying, “Wow, amazing you came in two days this week when you probably feel like shit! You should commended!” It is more often, “If you came in two days, you can probably swing a third, right?” The strong people are put in a position where they don’t want to say, “No, I can’t do that.” So, they end up doing it, to the detriment of your their health and well being. This has as much to do with not admitting their own health shortfalls to themselves as it does succumbing to the pressure to “do it all” (totally overrated, in my opinion).
I have health problems. I have a long history of not making a big deal out of it because I hate attention, and I especially hate attention for that. But, the fact remains that I have APLS, an auto immune disease that causes blood clots, which means I will take blood thinners for the rest of my life. I also have a mild case of Lupus, another auto immune disease, that took the life of my aunt a few years ago. I have an uncle who also has it. It’s something I don’t think about, or at least try not to, because it’s upsetting and I’m not a point where it affects my everyday life, so I have the luxury of not having to think about it. I take my medication, and then live my life as if nothing is wrong. That is a huge dose of denial on my part, because there are some serious things wrong. But that is my coping mechanism and it’s how I’ve always gotten through life. Psychologically healthy? Probably not, but it works for me and I’m still here and relatively sane, so I’ll keep moving along.
Part of having auto immune diseases is taking care of yourself. This is no joke. If you let yourself get run down, your diseases flare and bad things happen. I make sure I get plenty of rest. I work out. I eat a really healthy diet. I am vigilant to the point of obsession about such things because I’ve had some pretty serious flare ups and do not care to have them again if I can help it.
I don’t like talking about my diseases. Hell, half the time I don’t even like acknowledging that I have them. But because I look healthy and act healthy and pretend that nothing is wrong, most people around me are happy enough to do the same. So it makes it increasingly more difficult to stand up for myself when I need to say, “Hey, I need to take care of myself right now.” It makes me feel like people think I’m being a hypochondriac or a big baby.
I came down with a pretty nasty cold this week, and while it has affected half of my office and most of my colleagues are staggering around the hallways like snotty zombies (which infuriates me, BTW), I took two days off. I feel like they all think I’m a loser for doing so. But I have no choice. An afternoon napping on the couch when I’m under the weather makes all the difference in the world – not only for the current ailment (I guarantee my cold will be gone more quickly than these crazies who insist on coming in looking like death warmed over), but also to make sure my overall health doesn’t start slipping in a way that could cause me to have a flare up of something much worse.
The worst part of all of the disease thing? It’s the tiredness. Everyone is tired these days. People have too much on their plates, stay up too late and get up too early. If they have kids, they’re up with the kids half the night. I am tired because my body is constantly fighting against itself. I need more sleep than the average person, and if I don’t get it, my health falls apart. That is another difficult thing to try to make people understand. When I’m tired and say something like, “I’m exhausted,” it’s usually met with a response like, “I’m tired too! I was up until 1 watching TV last night!” Which is annoying considering that I’m tired despite going to bed at 10:30 and waking up at 7. One of my clients, an amazing and inspiring woman if ever there was one, has MS. She’s probably in her late 50s/early 60s and has more on her plate than anyone I’ve ever met. She’s incredible. After my last diagnosis, we spent some time on the phone. She’s the only person I know who truly understands what I’m going through. I talked about being tired, and she summed it up as “bone-crushing fatigue.” I can’t describe it any better than that.
So, no, I don’t want people fussing over me or treating me like I’m fragile and about to fall apart. I just wish there was a way to impress upon people the severity of my situation so that they would be a little more understanding when I need some rest or down time without me having to ask for it or point it out all the time. I don’t want to be that person. It’s awkward and inconvenient enough to have to deal with this stuff without having to explain it to people all the time. That puts me in quite a conundrum. I think I’m too tired to figure out the answer right now.