Talking Chronic Illness With Your Partner
By Dannielle Stewart
Your partner is often one of the most important people in your life, inevitably they become part of your chronic illness journey, but while some partners naturally step into the role of support person, for others it can be a challenge understanding what that role is and how they can support you on your journey. Today, let’s talk about how you can talk to your partner about chronic illness, what resources are available to support both of you, and starting that journey to understanding.
We asked members of our QENDO community to share their perspectives about what they wish their partners better understood about their illness. We also asked partners what resources they felt they needed to better support their loved one.
Firstly, let’s see what those with endo, adeno and PCOS wish their partners better understood:
Most respondents said they wished their partners knew just how much pain and fatigue they suffered with, sometimes on a daily basis
Several expressed that their mood and energy levels were affected on a daily basis, and that they often find it difficult to communicate this to partners.
Those undergoing treatments for infertility stated that they wished their partner knew the level of guilt they lived with knowing that they may not be able to have children
Some respondents felt difficulty in explaining to their partners about the affect of endometriosis and adenomyosis on their sex life
Most felt the mental load of chronic illness was misunderstood, that it can take a toll over time
“Even though I look okay, I’ve been hiding in the spare room breathing through the pain.”
“Some days you get a surge of energy, you’re not used to it, so you try and do all the things you couldn’t do on a bad day. Some days I can cut down trees, clean the entire house and meal prep - this is a good day. Some days I need Greys Anatomy and peace.”
“I wish they could understand how pain chips away at your energy levels and becomes exhausting, even though you haven’t done much.”
“Despite the fact that it’s my sexual organs that are affected, that I am still a sexual, sensual woman and even though it hurts sometimes, I still need to feel wanted”
“It’s not just bad period pain, I’m genuinely struggling and sometimes just turning the light off and letting me sleep is all you can do. Saying ‘I wish I could take your pain away’, no matter how beautiful it seems, still makes me feel like a burden to you.”
Now let’s explore what partners wish they knew, and what resources they wish they had:
All respondents wanted to know how they could better support their partners, that they often felt helpless or confused
One husband stated that he struggled to understand a typical cycle and how that affected his wife. He wishes that he knew and understood more about what causes certain symptoms so that he could support her relieving them.
Several respondents wanted to know what they could do during a flare, one suggested a specific list of ideas they could draw upon so that they didn’t have to ask. A personalised list of pain relief suggestions they could work their way through.
Most respondents preferred visual learning, through a brochure, bullet point list or online medium
Some respondents felt guilt about their own burnout, knowing that their partner was also suffering, and were unsure how to manage it
Start the Conversation
Talking to your partner can be difficult, especially if you have underlying concerns and guilt, but understanding cannot be achieved without your partner hearing your needs and you hearing theirs. Given that most respondents wanted to know what they could do to support their partner, starting the conversation is essential. Talk through your concerns and allow your partner to share theirs, provide education resources where appropriate, and answer questions about your experiences with endometriosis, adenomyosis, PCOS or infertility to help them better understand. You can request QENDO brochures and resources online to help your partner learn about your condition.
Using the QENDO App as a Resource
The QENDO App allows you to track your symptoms, mood, activities and food extensively to better understand how your illness affects you and the impact of your treatments and interventions. It’s a chronic illness manager. A thorough understanding of your own condition and what helps you is essential for you to communicate your needs to your partner.
As many surveyed partners identified that visual resources were helpful tools for them, sharing something like a report with them to help them better understand your cycle and how it affects you, or episodes of flare up and what helps relieve those symptoms.
You’re also able to develop your personal management plan using the app, identifying triggers, logging medications and interventions to prevent and treat symptoms, and adding as you consult with your healthcare team. Involving your partner in the development of this plan can be a method of helping them understand how to better support you. Use the information gleaned from tracking to develop an action plan for your partner during a flare, what can they do, what pain relief can they get you, what tasks can they help you complete? Make the list together and make changes as you add more management strategies to your toolkit. Each couple will have a unique relationship and different levels of involvement that you both feel comfortable with, decide on these together. As a partner, you can empower and enable your significant other to make decisions about their health, and be an advocate for their care.
The app also contains a resource section, with links to helpful resources from the QENDO site for both you and your partner. We have resources on both our blog and our brochure series written specifically for partners.
Helpful Tips for Partners (From the Chronic Illness Community)
Avoid the “fix it” mindset - chronic illnesses cannot be cured in most cases, only managed, the mindset that endo or adeno is a problem that you can fix will be unhelpful and frustrating for both you and your partner
Know that you won’t always have all the answers or always say the right thing - that’s okay. You and your partner are a team in search of answers, chronic illness is a marathon not a sprint
Active listening - listen with empathy, understanding and an open mind, rather than simply listening to respond with your own input. Many people with a chronic illness have spent years feeling silenced - you have the opportunity to listen
Make the effort to acquire knowledge from a reliable source, educate yourself to better understand what your partner may be going through, and help them make decisions
Recognise the signs of burnout: guilt, apathy, frustration, exhaustion, lack of commitment and increasing feelings of entitlement, feeling “at the end of your tether”. Carers need care too - admit these feelings and talk to someone, ensuring you make time for yourself. You can’t pour from an empty cup.
If in doubt - heat up that heat pack and apply liberally. Provide comfort food. Repeat.
References
“Caring for Someone with Endometriosis” by Jessica Taylor, from “Endometriosis 101: For The Significant Other”, Dr Graham Tronc.
“The Journey to Understanding” by Kyle Williams, https://www.qendo.org.au/blog/the-journey-to-understanding?rq=Kyle
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