5 things that shocked me about my chronic illness
March is Endometriosis Awareness Month, and it will also mark the one-year anniversary of my own diagnosis. The last 11 months have been full of scribbling medical appointments on my diary then re-planning every time one of those appointments was pushed back. I’ve argued with doctors, been supported and hugged by fantastic nurses. It’s been a huge learning experience. You can read all about a chronic illness, but nothing really tells you what it is to live with one. There are the 5 things that caught me completely by surprise:
1 Effective medical treatment is surprisingly hard to find. Endometriosis is not even rare: it affects 10% of women worldwide. It took me over 8 years of complaints to get diagnosed, 5 months to get a follow-up appointment after the surgery, and almost a year later, I am still waiting to be referred to a specialist. Endometriosis is not deadly, but it spreads in a similar way to cancer. This means that without treatment, my quality of life can decrease over time. To top it all the lack of knowledge on endometriosis in the medical field is appalling. Women with this condition are sent home after being told it’s stress, and many professionals are still inflicting a lot of damage by “advising” endometriosis sufferers to have babies as a cure. My illness is a battle against my body, but also against the medical field. Fun times.
2 Others will react very strangely to chronic illness. Last year someone close to me saw the reality of my illness first-hand. I was drugged up, curled up in the back of a car, unable to walk or even talk coherently. Although I was quite embarrassed to be seen like that, I hoped it would help put into perspective my diet choices, my lack of energy and why I struggled to smile. I was wrong. As it turns out, I ruined days out. When I was unable to dance for hours at a party, in other people’s eyes I saw pity and slight annoyance. I’ve been ignored, treated like a naughty child by loved ones who refused to acknowledge the reality of an illness they are not suffering. I was ready to be misunderstood, but I was never prepared to be shunned. One person actually had a history with endometriosis, but because their symptoms were milder, my suffering was seen as exaggerated.
Social media has brought up another interesting dynamic: if I don’t publicly complain about my condition, it’s almost like it doesn’t exist. It’s my job to keep reminding others of my illness, educate them, explain every single detail of it to justify my lifestyle. Increasingly, I have become tired of speaking up. I just take my meds, and get on with whatever the endo throws at me. If you are not sharing your life on Facebook, reminding everyone of your next hospital stay, people soon forget about you. Having a chronic illness can become a very lonely affair.
3 Depression is part of the package. If you suffer from endometriosis, depression very likely comes with: whether due to the state of perpetual rave of your hormones, other people’s reactions, the frustration at lack of effective meds or, very likely, chronic fatigue. This is the side of my illness that makes me feel like I am covered in tar: my arms and legs feel heavy, my eyes can barely open with the migraine that tends to join the party, and — on the good days — my uterus feels like it’s being softly grazed with a garden rake.
I feel tired 80% of my time, even as an active and outdoorsy person, even though I work as a Yoga instructor. I battled with this for years, but I had no clue what it was. I thought I was a lazy ass, a useless couch potato, unambitious, a loser. Believe this for more than a decade, and you end up with a black cloud that always follows you around.
4 Fertility will matter, even when it doesn’t. Last week someone asked my boyfriend, yet again, when we’re going to have children. As I am in my 30s I have been asked that question for over a decade, dozens of times. For a while, it was fine to just happily — and politely — brush everyone’s hands off my uterus. But guess what, when it turns out you probably can’t have any, the fun questioning, hint-hint nudge-nudge, doesn’t even stop. Apparently, the issue now is I’m not trying hard enough. If you are not going through IVF, miscarriages, or some other humiliating and excruciatingly painful treatment - and announcing it to the world — you are not trying hard enough. I’ve been “elegantly” vilified by those who expect me to produce babies for their enjoyment: “I’m never going to get a baby from you anyway”. In all honesty, everyone else’s over-interest on my ovaries doesn’t bother me that much. What troubles me is what’s not happening in my body, what “isn’t right”. I am not able to do what many describe as “the most beautiful” “the most precious” “the one life-defining experience”. It hasn’t happened and probably never will.
I wonder what’s the point in having a baby when life is so difficult already, but those who ask don’t consider that for one moment. The questioning, outside and inside, will only stop when everyone else deems me too old to reproduce.
5 Last but not least, and wanting to end this on a positive note, the most shocking thing that comes with endometriosis is the amount of self-respect and admiration I have for myself, but also every single endo-sufferer and every single person who suffers from a chronic disease. I still function, I am still a human being. I still manage to take care of my family, I still manage to be a good friend, cook a meal, I teach Yoga- even when on full chronic fatigue and oh-my-word-this-pain-is-excruciating mode. I still manage to crack a smile when I am high on drugs and experience pains equal to those when birthing. I can make jokes remembering how my fists searched for something — or someone — to punch while almost collapsing from pain. Yes, endometriosis comes with a lot of self-doubt, clueless remarks from relatives who don’t get it, and countless doctors that think it’s all in your head, but feeling like a tough, hardcore woman took me by surprise.
Seeing myself in the mirror, looking like death on the worst days of my existence, is the one thing that makes proud to be me, and everything it involves, chronic illness and all.
I guess I got endometriosis because I could bloody well handle this bullsh*t.