Before I became ill with endometriosis I was a very independent person. I was very driven and active. I liked to tackle life at my own (fast) pace.
In many ways this hasn’t changed, but endometriosis has forced me to slow down. To ask more of the people around me. This is one of the aspects I find hardest about chronic illness. To ask people for help frequently – often for things I could do myself effortlessly years ago. Endometriosis is a constant reminder of my (all too real) frailty and weakness.
Coming to terms with endometriosis has meant trying to reconcile the person I used to be against the person that’s left after four years of illness.
Relearning your identity
Your memory is your worst enemy with endometriosis. At the start of diagnosis you can clearly remember being able to do tasks easily and without effort. Fast forward several years later, and illness starts to become all that you can remember. You forget how easily you could carry items, or run without worry.
I always feel the pull-like pain of endometriosis now, even on the good days. Perhaps the tug of my insides when I do a little too much, the build up of pain if I push myself too hard. My identity shifts day by day between what I once what and I could once do, and what I’m capable of now.
So some days when we ask for help with something it still feels like admitting defeat or being lazy. Chronic illness pushes back against every learning you’ve had as a person up until now. We’re always told to strive hard, to push yourself further to reach goals. That as long as you work hard anything is possible. Endometriosis becomes a case in point that this sort of logic isn’t so simple, that life is complicated rather than a series of clear-cut decisions.
Through coming to terms with diagnosis you have to re-establish your identity, what you want to do with our life with your tired body. This is where asking for help comes in.
The benefits of asking for help
Coming to terms with endometriosis means coming to terms with asking for help. The reason we have need support is to help pace our precious energy so we don’t overstretch ourselves. Something really simple for someone else to do can set us back several days with fatigue or lead to several hours of pain.
It’s also really simple for someone else (who is healthy) to recover from exerting energy. This is a far more difficult prospect for us.
The intermittency of our illness can mean that other people find it difficult to understand why we might still be capable of managing things ourselves one day, and then struggle a few days later. It’s really important to build up an honest dialogue with the people around you so that they understand:
- Why you’re ill
- Why it won’t be cured
- Why you need support from others
- How difficult it can be if you try and do an activity alone
Frustration and seeming too needy
Over time (enabled by communication between you) good, reliable colleagues and friends will know what you can and cannot do, and will take you out of the cycle of asking by helping you regardless.
This really helps, because we’ve gone from asking people for very little, to asking for help with things on an hourly or daily basis.
It may occasionally lead to frustrations on both sides. You from having to ask for support from others and your friends and colleagues, and that act becomes a constant reminder of what you cannot to. It can lead to resentment on both sides too, you feeling like “the sick person” or “the liability” and the other person feeling like they’re doing everything all of the time.
What you have to remember during these sort of situations is:
- You didn’t choose to become chronically ill
- You would do the same for them in kind if you could
- You’re doing the very best you can at all times
Keep going. Part of this resentment comes (inadvertently) from a lack of awareness. People find it hard to believe sometimes (given your healthy appearance) that you’re really as sick as you say, it’s a very natural reaction to something out of their control. Remember how angry you were when you were first diagnosed, when your life first became limited by illness.
These feelings always pass as people learn and relearn how to cope with your illness as you have. The trick is to realise that moments of anger will happen and know how to respond – with the feelings you need in return (patience and sympathy). Remember that it’s it’s difficult for your loved ones too as they have to pick up the slack occasionally.
Asking for help isn’t a fault, it’s a necessary transition from being well to living with endometriosis well.
I love your blog! You are an articulate writer. I know what you’re going through. I’ve been there.
Have you noticed there is something very good about having a chronic illness – something that most other people don’t have: we can appreciate the good things in our lives so much more because others take their health for granted. I have empathy. I have true friends who love and support me. I have an amazing husband who is honest, kind and reliable. I appreciate my good days; I relish them; I seize them. On these days I may go to work, go on a walk, bake, watch a movie, laugh. These days may seem positively pedestrian to others but I love the ability to appreciate the little things. Endometriosis has given me something to defeat – everyday. I can be positive despite my pain. I don’t always win but I might just win tomorrow and that’s what keeps me going!
Imagine the luxury of a day, a week, a month or even a year without the pain or the worry of organising your cycle around the rest of your life in order to avoid the brunt of your pain during your working/studying/living! Imagine the luxury of taking the little things for granted… How frightfully dull. I’d much rather come home to my wonderful husband and say “I had a good day today” and see him smile.
Foxy that’s so true, I really couldn’t have put it better myself 🙂
Thank you for your eloquent, beautiful and much-needed description of the positive side of chronic illness.
Once again, a post that says it all. I love how this blog, while it is about having endo, is written in such a way that it’s really a great guide for healthy people who know someone with endo. It seems like I repost everything you write to facebook, hoping my parents or friends may click on it and learn about me. No exception today! Sharing now.
Thanks Rachel. I’m glad I can be of help. I actually found your website a great comfort when I first searched around the web for other women with endometriosis too, so we’ve come full circle 🙂