these are the things that have helped me survive
By: Georgie Wileman
Life with Endometriosis is hard, there’s no getting round it. Endometriosis is terrifying, it’s isolating. It’s knee buckling, sweating, teeth clenching pain. It’s guilt and anger. Sometimes it can become everything you are. I have been sick since I was thirteen, in less than three years I’ve had five surgeries, with a hysterectomy scheduled for this year at the age of twenty nine. I’ve been diagnosed with Endometriosis and Adenomyosis; with suspected Interstitial Cystitis, Pelvic Floor Dysfunction and Central Nervous System strain. I am homebound, in a wheelchair, and in constant pain. Endometriosis has taken many things from me; but that’s not what I want to write about today.
Despite my current situation, this disease has given me a lot. It’s removed everything from my life that didn’t matter, and has made very clear the things that do. It has taught me what I am capable of. Under the clawing fear of what is happening, I have to try and keep believing that I’ll get through this. I will be ok, and I’ll be a better and stronger person for it. When asked for advice on living with Endometriosis, I try to share the following methods and resources. Today I want to write about what I’ve learnt and the ways I’ve kept breathing. For people with this disease, sometimes surviving is all that matters; these are the things that have helped me survive.
LEARN. Try to learn everything you can about Endometriosis; about excision surgery, pelvic floor physical therapy, central nervous system overload. Try to educate yourself on other conditions that are commonly seen alongside this disease; for example my surgeon believes around 90% of women with Endometriosis also have Interstitial Cystitis. Read up on the Endo diet, or IC diet if you have regular bladder pain or UTI symptoms. Look into pain medication alternatives, such as acupuncture or cannabis products. Research your doctors; who they are, if they are trained enough to help you. Consider funding options like gofundme for excision surgery and treatment costs if you need assistance. Negotiate with the billing departments for your surgeon and practitioners to try and reduce your costs. Write to excision surgeons; some are known to do pro-bono work. Knowledge is powerful, it will give you purpose, it will help give you control.
BECOME A PART OF THE ENDOMETRIOSIS COMMUNITY. I have been overwhelmed by the support and sisterhood of these people. Online or in person, speaking to others who know what you’re going through can give you vital support and validation. We can learn from each other, we’re stronger together. But do try to be aware of yourself and discover what works for you; I’ve learnt when spending time in support groups will help me, and when it won’t. Sometimes you need to escape it all, and that’s ok.
BE KIND TO YOUR BODY. It’s easy to not connect to it, to be angry at it, to hate it. But our bodies are in this with us, and they’re doing the best they can. Try to forgive it. Feed it well. Let it rest when you’re able to.
COMMUNICATE. I know it can feel like we are alone in this, but often we’re not. Talk with your family, your partner. None of them will feel this disease like you do, they aren’t going through what you are - but they are going through something else. Try to keep communication open between everyone who is in this with you, it will help you all get through together.
TAKE CARE OF YOUR MENTAL HEALTH. Our physical bodies take so much of our energy and attention, it can be easy to forget our emotional wellbeing. Whatever effect Endometriosis has on your life, it is a lot to cope with; it’s ok to need help with that. See a therapist or chronic pain counsellor if you can. Look into the practice of Mindfulness. Begin meditating to guided meditations for anxiety, depression or pain. Try starting a journal; writing down what’s running through my mind in challenging or desperate times has helped me make sense of it, more than I ever thought it could. Allow yourself to feel it all when you need to, it’s ok to grieve. Know when you need to reach out; try not to isolate yourself with dark thoughts or suicidal feelings. Many of us have been there, you are not alone. Speak to someone who can help you in those moments; someone you know, or on a support line.
FIND THINGS YOU LOVE. Endometriosis can take away much of what we’re passionate about; it can stall or stop us from doing the things we’d always thought we’d achieve. In the last few years I’ve been a photographer who could barely take pictures. I began documenting my journey with Endometriosis through photographs; it has given me a great sense of purpose. I also started writing, something I used to enjoy but forgot about over the years. Finding things you love that you can do right now, will help you come back to yourself. Keep remembering who you are, and try to find a way to be that person, despite your current limitations.
BE THANKFUL. Sometimes the idea of this feels laughable. But despite everything, I have so much to be grateful for. Focusing on those things, or writing them down, can help make the parts of our lives we’re not thankful for, feel more manageable.
HOPE. There have been times through this journey when I started to lose my hope. I thought I had reached the end of the road and believed I was soon to be out of options medically. I am now having treatments that I hadn’t even heard of six months ago, and I have to believe that should these not work, there will be something else out there that will. Endometriosis in particular is a disease where reading a comment on a support group, finding another surgeon, or an alternative way to manage your pain, can send you on a whole new path. Things do change, and they will keep changing. I heard a line in a guided meditation that has always stayed with me; to think of the seasons and changes in nature, and our own innate ability for change and renewal.
During the months after my first excision surgery when I believed that my fight with Endometriosis was over, I had a circle tattooed on my arm. I was grieving for the 15 years I had lost and overwhelmed by the life I thought I had been given; to me that circle represents the continuation of life. Despite the fact that life has brought me back to this couch, back to this wheelchair and these doctor’s offices; the circle still brings me great comfort. Things do change, and they will change again. Try to hold on to that, sometimes it can mean everything.
What helps me or others that you know with chronic illness, may not work for you. Find what brings you comfort, strength and light; and try to remember to come back to those things when you’re able to. We can only do the best we can.
One day at a time.