Redefining intimacy in life with chronic illness
It may not always feel like a priority, but connection is a fundamental need
Written by |
For many of us living with ANCA-associated vasculitis — or supporting a partner who is — intimacy may not be at the top of our daily priorities, which is understandable. When we are managing symptoms, medications, appointments, and the sheer effort it takes to get through the day, connection and romance can easily fall to the bottom of the list.
In many households navigating chronic illness, this is not unusual. In fact, a recent survey by the Eosinophilic & Rare Disease Cooperative found that intimacy ranked last among concerns like physical ability, independence, and avoiding medical crises. That result may not be surprising to many of us, as it reflects the reality we are living.
When symptoms flare or energy is low, our focus often narrows. We may find ourselves concentrating only on immediate needs: managing pain, catching our breath, getting enough rest, or supporting our partner through a difficult day. In those moments, intimacy can feel distant or even irrelevant.
But just because it isn’t always front of mind doesn’t mean it isn’t important.
The body’s stress response
Intimacy, at its core, is about connection. And connection remains a fundamental human need — even when, or especially when, we are living with chronic illness.
Recently, my wife, Pam, and I had a powerful and eye-opening conversation on the “Rare Candor” podcast we host. We spoke with Jessica Szymas, a licensed mental health counselor and certified sex therapist, about why intimacy can feel so complicated in the context of chronic illness — and, perhaps more importantly, why that experience is so normal.
One key idea she highlighted is how our body’s stress response — often described as “fight, flight, or freeze” — plays a major role. When we are dealing with ongoing health challenges, our nervous systems can remain in a heightened state of stress. This doesn’t just affect our physical symptoms; it also impacts our emotional availability, our sense of safety, and our ability to engage in intimacy.
On top of that, many of us are navigating changes in our bodies. Weight fluctuations, fatigue, pain, medication side effects, and shifts in self-image can all influence how we feel about ourselves and how we relate to our partners. It’s no wonder that intimacy can start to feel complicated or even overwhelming.
Understanding this can be deeply normalizing. There is nothing “wrong” with us for feeling this way. Our responses make sense in the context of what our bodies and minds are going through.
So where do we go from here?
Expanding our understanding of intimacy
One helpful approach is to start small and focus on rebuilding connection in ways that feel manageable and safe. Szymas shared several practical tools that can be gently integrated into daily life.
One resource that many find helpful is “Burnout: The Secret to Unlocking the Stress Cycle” by Emily and Amelia Nagoski. The book explores how stress becomes trapped in the body and how we can begin to release it. Sometimes, simple practices can make a meaningful difference. For example, something as small as a 20-second hug or a six-second kiss can help signal safety to the nervous system and foster connection.
Another valuable resource is “Come as You Are,” also by Emily Nagoski, which explores intimacy through a compassionate, science-based lens. It emphasizes that there is no single “right” way to experience desire or connection — something that can be especially reassuring for those of us whose bodies and energy levels may change from day to day.
Szymas also introduced the concept of the “Wheel of Consent” by Betty Martin. This framework offers a clear and thoughtful way to understand interactions in relationships — distinguishing between giving, taking, allowing, and receiving. For many of us, this can be transformative. It encourages us to better understand our own needs and boundaries while also creating space for open, honest communication with our partners.
Perhaps one of the most important takeaways is that intimacy is not one-size-fits-all. It is something we define, and redefine, over time, especially as our circumstances change.
For those of us living with vasculitis, this may mean expanding our understanding of what intimacy looks like. It might be found in a quiet moment together, a conversation where we feel truly heard, a shared laugh, or a simple touch that communicates care and presence.
At the end of the day, intimacy is not about perfection or performance. It is about connection. And that is something we all deserve.
While our conditions may not have a cure, there are still ways to experience healing. Sometimes that healing shows up not in treatments or test results, but in closeness, understanding, and the willingness to stay connected — to ourselves and to each other.
Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.
Leave a comment
Fill in the required fields to post. Your email address will not be published.