On Sunday, August 5, 2018, our little support group hosted a BBQ to honor those who support us: our friends, our families, our partners, and fellow Sisters. It was BEAUTIFUL!
One aspect that was born out of the BBQ was this Advice Notebook. Literally words of wisdom and encouragement from:
- Endosisters to Endosisters
- Endosisters to Support
- Support to Endosisters, and
- Support to Support
We left the book out and invited anyone who wanted to write in it to do so. And we will carry this book to each support group meeting, future event, and walks and supply a pen or two.
For your reading pleasure, I present their incredible words (and will continue to update this list as more entries are added):
Advice to Endo Partners,
You will find yourself expanding the bounds and upper limits of your patience for your partners as they ride the rollercoaster of pain and emotional distress that is Endo.
You will be torn apart and feel helpless when your partner is in pain. You will find yourself wishing your partner was up to a walk or a hike when they are exhausted from the day-to-day continual recuperation they are in.
You will find yourself struggling to understand their rationale when they are in a battle with their hormones to function rationally.
You will find yourself angry at every doctor and drug manufacturer as you see ineptitude and false claims of a cure.
You will become enraged when you recognize charlatans who prey on the loved one you have, who peddle snake oil and magic crystals to “cure” a very serious and real condition.
You will come to hate the word “cure,” as it is a false promise.
You will hear of others who are saints to their partners, and you will be envious.
You will hear of those who fail in their emotional support of their partner, and it will anger you.
You will have this strange yet detached empathic bond with women you don’t know, but know they have Endo…though you will have difficulties being open at times to their path of treatment in their struggle knowing the Hell it put your partner through.
You will be seen as your partner’s greatest Hero when you are supportive, but the greatest villain when you are not available to be supportive. Fret not, the perception is temporary.
There will be times you surrender your “you time” to meet a need for your partner. You will never get that time back, but your compassion level grows with your sacrifice.
You will come to hate every bottle of painkillers in the house for what they do to your partner’s clarity, but you are conflicted because they assist to relieve the pain.
When you spot a profiteer who makes prey of your partner and her Sisters, your blood pressure will rise.
You may find yourself bitter at some of your partner’s friends that do not have Endo, and become judgmental of them for their lack of understanding and emotional support to your partner.
You will occasionally feel that you are being dragged along as your partner takes you to some support function, and it may tire you…Remember how tired your partner is. She seeks constant support because the sickness she endures is such a mystery to those who sincerely try to treat it. Endo is under-researched and over-treated by those who take stabs in the dark at it, because so little is known about it.
You will try to cage your anger as you try to learn about it, and run across three bad articles for every one good article that has some form of truth or meaning in it.
Your own gut will feel pierced when your partner screams after surgery.
Your heart will ache every time she doubles over.
So the advice to the partner is to breathe, first of all, open your understanding and stay receptive. Take time for yourself without guilt. Talk with your partner. Let go your anger when you can and do not displace it onto your partner when it is the Endo you are actually angry at.
(A little up arrow to the above entry) Ditto to all of this. Thank you. I’ve never heard this stated so truly or clearly. ❤
Practice self-compassion. Be kind and patient with yourself, especially in the moments when it feels that the whole world is against you.
Be patient even in your most painful days when you want to do something but you cant. ~Angel (husband)
Just be there for your Endo-warrior! Patient – kind – it’s a long, painful, misunderstood road for them. Be patient with yourself…do what you can — when you want to do so much more. Love my Endo-warrior. ~(mom)
There is strength in numbers. Continue the fight but always know that you are NOT ALONE in this fight! ~(husband)
To my fellow EndoSister:
Follow your gut instinct and don’t take no or maybe for an answer. You know your body best, not any doctor or nurse unless they themselves have had Endo will they truly understand. Give yourself the days you need to sleep, cry, be angry – always remember those are temporary feelings. Take time to get grounded and feel joy amongst the pain and frustration. Find a group. Bloomin’ Uterus has been instrumental in saving my life every day. These women get it, completely. Talk about it every chance you get and fight for your rights as an Endo Survivor. This will lead to greater awareness that will lead to better care for future generations. Realize that not everyone can handle the pain you feel because it’s not on the outside. Find those who can support you and be there for you unconditionally because you deserve it and are worth it. Know that you are loved.
It’s okay to get unmotivated, to feel defeated. It’s okay to not want to take all your damn meds and just lay in bed. But never, never, NEVER give up! We have the support of all our EndoSisters to push us a little when we need it. But do not give up on the fight. So many days it may feel like this is not getting better but we can keep fighting for more research and more solutions. It just simply has to be okay. ~(EndoWarrior)
Dear Endo Warriors,
There are a growing number of us in the world, in San Diego, in your community who have your back. You may feel like you’re alone. Even if you don’t feel that way now, maybe you used to. You’re not alone. Be patient with us support people (or don’t. Snap at us if you want to…sometimes we need and deserve it!)…It takes most of us some time to learn and understand, but we’ll get there. ❤
Dear Support People,
It’s so hard not to be able to “fix it.” I don’t have any advice, we all kind of figure it out as we go along. Keep listening to your loved one(s), find what they need, and offer it without asking. Keep sharing with other people who don’t have Endo…that’s how the world/medical community will eventually change and start to provide better care and research, right?! ❤
When you are doubled over in pain – reaching for your pain meds and heating pad…remember this: This is not all in your head! YOU ARE NOT CRAZY! Our society is crazy for not supporting our healing treatment and pain management…OR A CURE! Your pain and suffering is not your fault. Just because you had a cheat day with wine does not make you a “Bad” EndoWarrior. Just lay back and focus on the last time something really made you laugh so hard that you peed a little. That always helps me. There is no “right” way to deal with this disease – the only way to do any of this right is to listen to your body and your intuition. That’s the best gift you can give yourself. Love yourself. Breathe. And lean on your support system. And take those cheat days when you really need them. Life is too short to be the “perfect” EndoWarrior. ❤ Love you ❤
Never forget your strength and that of your partner. There is no map for this territory, you are bold to go into it together! Don’t forget that your affection and loyalty is foundational throughout this challenge. Continue to communicate. Continue to empathize. Be flexible and humble and wise. This lesson belongs to you, too. Do not let it pass you bay. In solidarity.
Dear Amazonian Endo Warriors –
I have watched one of the smartest, strongest, most precious person go through her pain and ups and downs with this silent monster problem and illness. It has never ceased to amaze me how she can tell her mom how tough the past few days have been and then meet me with a smile and hug later that day. She reminds me how lucky I am to have my life and not have to face Endo each day. She is my Hero and one magnificent person. Being here today with everyone makes me see how many other Amazonian Warriors there are around me each day, walking in silence. I cheer you all and quietly salute you. Carry on!!! ~ (An Admirer)