Recently one of our youngest support group members, Celestia 'Rose', shared what endometriosis means to her and how it has affected her education and life. Today we hear from Rose's incredibly supportive mum, Kimberley.
We first met Kimberley, along with Rose's father Colin at one of our 'bring a loved one' events in 2017. Kimberley and Colin are actively involved in advocating for their daughter and the endometriosis community in Perth.
Kimberley shares her experience as a mother, advocating for her daughter.
“It looks like she has endometriosis,” says our Doctor
I listen patiently to all the information- secretly freaking out- whilst remaining calm, quiet and composed. I’m the Mum, I’m supposed to be able to handle this! Sh*t! I can do this, can’t I?
Holy crap- what now?
Endometriosis is crippling!
Physically from time to time it has put my youngest daughter into a wheelchair because the pain is so bad she’s too exhausted to walk. It causes her to withdraw socially and mentally- sometimes I’m scared she won’t come back to us. Sometimes it cripples me to a point I’m almost too scared to go get groceries because I don’t want to leave her alone. Why can’t I just “fix” her like I used to do when she was little? Kiss it all better for her like I used to do?
The upside - we hang out together a lot. Binge watching Netflix, laughing at how sh*t the situation is at times and laughing at ourselves. We actually like each other! She and her big sister get on better than ever now - another upside especially with the first grandchild due later this year!
Emotionally, it’s exhausting. The constant roller coaster of symptoms she experiences has a ripple effect on all in her orbit. We feel the thrust and pull of everything she is going through, yet we are the ones who need to be strong and supportive in the best way we can. She naps, while we covertly watch over her and wish we could just “fix her”.
The upside - we have learnt to do less and relax more ! It’s made my relationship with my husband stronger. We are in this together!
Financially, it’s a B*tch! The ongoing costs of medical appointments, medications, scripts plus over the counter drugs is scary! We also choose to support her with Traditional Chinese Medicine, acupuncture, chiropractic, kinesiology and homeopathy. We do this because thankfully we are in a position to afford it and it fits our beliefs in treating the “whole person” not just treating the ailment. She has many more ‘good days’ now than bad ones. Maybe we will slowly “fix her”. The upside - fortunately my business is doing well and working from home gives flexibility for appointments. I also have fabulous staff who are more like family than employees.
Socially, it’s crippling. Not only for the sufferer but also for those who love her. We make plans and then change or cancel them depending on how she’s feeling and how awful the flare is. If we go without her, we quietly worry that she’s ok at home on her own. We repeat the same story about endo and it’s impact upon her as an explanation as to why she isn’t with us at an event. She’s crippled on the couch, with a cat for comfort. We get asked, “Why haven’t you been able to fix her? When will she get over it?”. The upside - I have met so many new people with amazing skills. I’m building a network of people who are talented and who really are interested in helping my baby girl. We also entertain more at home because it’s easier for all of us to be together.
Endo is crippling in the kitchen. Yes!!! Her diet is limited and changeable. Sometimes it’s quite varied. Sometimes it’s not. Damn, why didn’t we buy that avocado farm when the opportunity arose! We could supply all the beautiful EndoSisters with avocados. The upside - she is learning to cook and she’s good at it!
Endometriosis has given us an amazingly strong and determined daughter. It’s helped her to develop a wicked sense of humour and wisdom beyond her years. She is going to be an awesome Aunt! It’s bought us some incredible new friends through the EndoSisters and helped me to find my voice particularly when it comes to treatments and other options for my daughter. We can’t “fix her”, but we sure as hell can love and support her until someone finds a way to ‘fix’ endometriosis for good! That’s a big upside!' - Kimberley