I read this article on Buzzfeed entitled “19 Things People With Chronic Pain Want You To Know” and the delightful summary was “We may not look sick, but we are sick.” I definitely could relate to the article and I also liked and shared it on Facebook.
My chronic condition is endometriosis. For those who don’t know what it is, it is a female issue where tissue that is supposed to remain in the uterus goes commando and grows outside of the uterus. What sort of mayhem does it do to my body?
- irregular periods
- excessive bleeding (there were times where my periods lasted for 2 weeks)
- extreme cramps
- weight gain
- irritable bowels
Doctors don’t know what causes endometriosis and there’s no cure for it. I’ve undergone a couple of surgeries just to cope with it.
I’m more than happy to talk about my condition with friends and family, without trying to gain sympathy but to spread awareness. Heck, I only knew about fibroids until I was diagnosed with endometriosis. However, please don’t make any silly comments. I got really pissed off with a headhunter once because I had written “endometriosis” on a job application and she called me to find out about it. The conversation went something like this:
Headhunter (HH): So…you get cramps every month?
Me: Err…no, I get irregular periods and sometimes the cramps don’t come but sometimes they do. When they do, it varies from slight to extreme pain.
HH: So…you get cramps more than once a month?
Me: No…sometimes have, sometimes don’t have. It really depends.
HH: You get depressed every month?
Me: No!! It really depends. There are a lot more good months than bad months and because I recognise the symptoms, I know how to cope with it.
HH: Are you on medication?
Me: No. I had a very bad reaction to a medication so my doctor recommends me doing things naturally to try to get my menstrual cycle to return to normal.
HH: So you have your period every month? Cramps too?
Me: (starting to feel pain from rolling my eyes too much) NO….as I’ve mentioned earlier, my uterus can’t decide whether to come once or multiple times per month and I’ve got an IUD to try to prevent as many periods from coming so that the uterine lining doesn’t grow.
HH: Oh…the other surgery was to remove all the lining?
HH: So it’s all removed and cured lah.
Me: No…cos some of the lining, called adhesion, has caused my uterus to be stuck onto my intestines and couldn’t be removed. Also, there’s nothing stopping my lining from wanting to grow outside my uterus too.
HH: Oh…so it’s not cured.
Me: That’s why it’s a chronic problem….
In the end, she told me that she’ll look for long-term jobs with better medical leave due to my condition. See. Her heart wasn’t in the wrong place. She just had a funny way of trying to understand that chronic conditions don’t strike on schedule.
Do you know that our wallets are a lot emptier because of our medical bills? Each time I go to my gynae for a check-up, it’s about $200. That’s before any fancy schmancy tests or pills.
Let me stop before I go on a full-on
rant explanation about my condition, as this blog post isn’t about that. My post is about seeking people’s understanding as well as to get more people to shed their prejudices.
It has been about 3 years since I’ve been diagnosed and what I have learnt is that more often than not, those who truly understand are those who have chronic conditions too. As awesome it is to have another human empathise with our condition, I want ‘normal’ and ‘healthy’ people to appreciate that despite our chronic illnesses, we’re living as normal a life as we can.
I’ve heard many stories from friends who have chronic illnesses (not only me) and often times, they too complain that when they take medical leave because they have to, their colleagues get upset and roll their eyes to say, “Yet again.” Sounds way too familiar to me.
It has gotten to the point where I don’t feel that I’ve got the right to take my 14 days of annual medical leave and instead, have to take my regular leave when I’m actually not feeling well. I’m not the only one. Talking to these friends of mine, they too feel guilty whenever they have to take medical leave. When I tell this to my good ‘healthy’ friends, they get angry on my behalf and exclaim, “But it’s your right!” Uh huh…tell that to the rest of the world who obviously take a sickie when they’re not sick. These people don’t realise the number of times that I haul my ass to work when I really am not feeling 100%. Please just accept that we’re really not feeling well and stop thinking that we’re trying to screw your work life up.
So, do forgive me for those days where I’m super emo, suddenly lethargic or when I just don’t seem sociable. I don’t see my endometriosis as a crutch. I do wish that I didn’t have it but since I do have it, I just see it as something that I have to live with. Just like how some people hate their legs/arms/butt/shape of their eyes, I hate my condition but I still have to live with it. Can’t help it.
I’m trying my best to not let it get to me (there are weeks where I may only work 3 days but I’m helluva more efficient than my peers) but I would really appreciate it if you don’t make my life harder than it already is. No need to walk on eggshells. Just don’t judge me.