On Losing Time with a Chronic Illness


Women, especially women my age (that is the over 30 set), are always told to mind their time. It starts young, when you're a girl, they tell you you're not old enough for this and that and you can't wait for time to speed up until you're a grown up. Then, you're suddenly smacked with the feeling that you have to everything as quickly as possible.

Family, friends, and even the media, tell you that you're too old to have a baby over the age of 30 (35 if you're stretching it, though many women continue to have babies into their early to mid-40s and are not, generally speaking, medical miracles), the pressure to be in a stable relationship and have your career set mounts. A woman who wants to "have it all," must have really completed it by the age of 26 or so in order to be seen as socially acceptable. The message is also clear: if you're not in a relationship by your mid-20s, you're going to have a hard time finding someone else if this doesn't work out (even though logically everyone knows this isn't true and tons of people find lasting love at every age). And men wonder why women "act crazy"? Try having that pressure on you!

And even though I'm in a long-term, stable relationship, I still get pressure from family and friends to "make things official" or asked when we are planning kids. But because so many women in my family have had kids as "old women" (in the tail end of their 30s and early-to-mid-40s), I'm not as worried about that as I am what other people think of me at times. Even though it is 2015, being not married and childless over the age of 30 is still kind of, I don't know, weird. Everyone wants to know when I am going to join their ranks, even if I'm postponing having kids for a few more years.

But this isn't about that, really. This, instead, is about the idea of losing time when you have a chronic illness and trying to reconcile it with society's pressures to be a certain way at a certain age or have certain things. In one way or another, I have dealt with a chronic illness that has affected my daily life since high school. With careful planning, I have been able to hold down a few jobs (taking only those that would suit my exhaustion levels), complete a BA, two MA degrees and am in my final year of a PhD. I have lived abroad several times. Yet, due to entire days, weeks, or even sometimes months of extreme fatigue and pain, I have missed out combined on years of my life, making feel even further behind some of my peers.

Granted, most people don't think I am 31 (the clown doctors I had during my last hospitalization tried to refuse surgery for me on the grounds that I was too young, when they hadn't even bothered to look at my chart to see that I wasn't as young as they thought), which is thanks to some seriously amazing genes (meet my parents one day and you'll know what I am talking about...I love watching people's faces when I tell them how old they really are), but often times I feel like a more slightly put together (and a with a bit more direction) version of my 24 or 25-year-old self. And if you add up all of the years I've lost due to lupus and all of its complications and subtract them from my actual age, it is possible I am only about 26! ha.

But it is difficult to reconcile this feeling society imposes on you of running out of time with feeling as though time slipped away from you. It's as though I've had no time in between and my choices are being scrutinised (which I know they are because I am older than my boyfriend, which of course is weird and subject to all sorts of rude, judgement and crazy comments). It's as though sometimes for a woman, her happiness matters less than her meeting these benchmarks set out by society. And I wonder how women who have met these benchmarks in perfect time feel about their choices and whether they are ever scrutinised? Do they ever wish they had delayed these choices or are they constantly reassured they've done the right thing? I often wonder!

 Perhaps everyone feels this way in one sense or another, but I often feel as though I missed out on a large portion of my 20s (and even now) because it isn't easy for me to do things like stay out late regularly. I feel like this very odd mix of the 22-year-olds I know with their optimism for life and zeal for new opportunities since I've missed out on so much, and the 80-year-olds I work with during my day job, who are often tired and in pain. It's like I am much younger than myself, but much older than myself at the same time. Does any other lupus patient feel this way?

I have a few more tests and one more surgery to be done this month, so I hope those two help fix what has been going on with me that has made me lose up to several months last year. Until then, I'm plodding along with life and hoping not to lose much more time. It is the one thing we can never get back.

Sorry for the downer of a post, it is just something I've been thinking about lately!




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4 comments

  1. I think you need never apologise for tone of post, my lovely. Your readers are here to support you :)
    I hope your tests and surgery pass by quickly for you, your life has much more time for exploring, enjoying and being you so no need to rush :)
    I'm also in my early 30's and am forever questioned about kids and told I'm getting too old to wait any longer or even married but we are happy as is, thanks world!
    Gillian  xx  EyelinerFlicks

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    1. It's so silly, isn't it? I know people who found their perfect partners in their 40s and 50s. If you are happy as is, who cares? You are never too old to learn and explore, even though it feels like society says it is sometimes! xx

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  2. I think you've accomplished so much in your young life despite your illness. It truly is remarkable! I too have had a chronic illness for the past 10+ years and do feel quite badly about "losing time". Although, I know that I have to listen to my body or I would have no life at all. The moments and hours that I do feel well are spent doing quiet things that I love and that helps to "keep me happy" when I start to feel low about the things I miss out on. Thank-you for this lovely and honest post. :)

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    1. Thanks Natalie! I feel ya. Sometimes it doesn't seem like I accomplish much when I spend so much time asleep. :-p xx

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