There are days where endometriosis is all I can think about. I always feel the pain and fatigue, it hangs over me like a shadow that I do my best to ignore.
Then there are the little ways that the disease effects me, like the way it effects my walking speed or my ability to bend and move. Most days the pain tinkers with my brain as I’m talking and reaching for the right words, occasionally making my speech staggered and disjointed.
So with all that constantly our minds it’s reasonable to expect anyone that suffers with endometriosis to talk about it a fair amount.
Knowing what to share and not share
When you’re first diagnosed, a very wide range of people will show some obvious concern for you leading up to diagnosis. As time goes on though and years pass, many people expect improvement, for you to get better, and for the pain to have gone away.
So our struggle with endometriosis isn’t just a lack of awareness of this disease, but a wider lack of appreciation about chronic illness.
To some people around you, you’ll inadvertently become a reminder of illness and mortality no matter what you do. Generally speaking, people don’t like to dwell on these topics, so it becomes uncomfortable listening for them.
“There are many terrible things about illness; the lack of empathy hurts the most.”
– Havi Carel
So talking about endometriosis becomes a careful balancing act. Establishing how much to share with the people around you, based on a number of factors:
- How well they know you
- How comfortable you are talking to them about it
- How honest you can be about how you’re feeling
- How uncomfortable they’re likely to get if you share too much
- How much pain you’re in
There are no easy answers with this issue, but in time you start to get a better understanding of who can and will listen to whatever you want to share, and people who very much suffer with their own sort of compassion fatigue.
Taking about it too much?
Endometriosis has a way of making you realise who your real friends are. Regardless of how positive we can be, realistically it has become a part of our lives, shaping our identity. Endometriosis bleeds into every part of our lives. How easily we can work, how easily we form and maintain relationships and how we think and act. It effects everything.
Some days it’s impossible not to talk about. We do everything we can to ignore it and feign a level of normality. So most of the time endometriosis has a way of making me more candid. Life (and by proxy) time has become too precious. Some people may complain about hearing about it too much, but on these days I remind myself we do not get a break from this illness, so on those days only my patience saves anyone else from my burden.
The hardest moments of sharing
The trickiest moment is when someone asks us how you are. In time again, you come to know who asks you unconditionally (who genuinely wants to know) and those who only asks to ease into conversation, judge your response carefully. If in doubt, share a brief detail and move on quickly. I rattle out “I can’t complain” constantly, it’s ambiguous enough for someone to take the meaning they want away from the conversation without an outright lie.
It does remain hard to stay quiet sometimes. Impossibly hard. All around you there are healthy, capable people complaining about flippant aspects of their life, problems you wished you could shoulder rather than the ones you had.
On those days I urge you to try think back and remember a time before endometriosis. When you went through life without baggage or worries, you simply were. It’s no ones fault that we have this illness, while shouldn’t wish illness upon anyone – take comfort from the fact that in time everyone around you will understand and empathise more.
This will happen partly through you raising awareness of endometriosis and other chronic illnesses, but also because of the fallibility and frailty of the human body. At the start of life we feel invincible, and as we grow older we become more aware of our limitations. As endometriosis sufferers we have a wisdom far beyond our years.
In time, others will realise that this isn’t something that will necessarily get better, and they will change their focus from trying to make you well to just supporting you unconditionally. These people are the people to hold onto for dear life.
Because illness is a part of life, as natural as living, breathing or dying. It’s something we all face at different points in life, for different stretches, as such we shouldn’t be ashamed of talking about it.
I wish I could like this post 5 gazillion times!!! I’m posting it on facebook for sure….maybe it’ll help someone understand.
Okay, and lately this problem of fumbling with words has EXPLODED into my life. My sentences often come out like I’m not a native English speaker, with a lack of grammar and the strangest wordings possible. I sort of just attributed it to speaking too fast or too lazily, but is this endo? I should have known – isn’t it always endo?
Reading this felt like a warm but bracing hug. I was made no promises, but I felt better anyway about facing life with endo one more day.
Yes, fumbling with words. I was always keenly aware of this since my endo started since I always had an effortless ease with the spoken word before I was diagnosed. It came to a head because someone was teasing me because I was having to think every other word about what to say and I had to point out – “you do realise why I am struggling to speak right?”.
Ah yes, it’s amazing how far-reaching the effects of this illness are. Never ceases to amaze and sadden me in equal measure.
Thank you for your support, knowing people are finding my updates helpful and supportive makes the whole thing worthwhile.
Thanks for a great post!! Learning who your friends really are can be a painful process. I tend to keep things bottled up about my real physical condition – especially at work! As the years have gone by, I’ve found out the hard way that there are some who will never understand. Unfortunately, I’ve had to consciously let go the friendships of some who were less than supportive but I’m now lucky enough to be in a job that I enjoy and in an office that is taking an active interest in helping me recover from my recent hysterectomy; I have a select few true friends who are supportive and kind; I am married (for the second and last time) to the love of my life and a man who regularly goes out of his way to help me. It’s obviously taken a few years and the first marriage was a casualty partly because Number 1 was unable to understand and support me when I had symptoms and miscarriages. I consider myself very lucky now but I also know I’ve had to work at being happy.
You’re most welcome.
I’ve had to let a lot of friends go too, people just don’t understand easily, especially when they’re still quite early on in life.
Really glad to hear you have a job, friends and partner that supports you. Gives me hope for us all 🙂
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