This topic is literally the last thing on anyone’s mind who has a chronic illness and/or rare disease. ERDC’s most recent survey results prove this. Out of 8 items that include feeling safe from disease crisis, autonomy, physical ability to do ADLS… it’s not surprising that concern with intimacy is the lowest score.
Recently, we discussed this issue with Jessica Szymas, a licensed mental health counselor and Certified Sex therapist for a Rare Candor podcast episode. It was a normalizing discussion of what is happening in our bodies with the fight, flight or freeze battles when it comes to taking on chronic illness. Not to mention that chronic illness with all of its medications and limitations, changes our bodies in every way with unwanted weight gain or loss, strength and stamina loss etc.
How do we deal with all of this unwanted stress and uninvited body changes?
Overall, Jessica gave us some really great tools and recommendations to start basic discussions. The book Burnout, The Secret to Unlocking the Stress Cycle by Emily Nagoski is a wonderful place to start. She discusses how and why stress is locked in our bodies and ways to work through it. ( 20 second hugs and 6 second kisses are a fav in our household.) Come as You Are by the same author is another recommendation. (Love the double entendres!)
Probably the most practical tool is The Wheel of Consent by Betty Martin. I recommend that you look it up to work with it. The wheel is divided into 4 quadrants; Giving, Taking, Allowing and Receiving. My biggest takeaway is that you really have to be tuned in to your own needs, wants and boundaries and be willing to clearly communicate with your partner. Part of this very needed communication is defining and redefining what intimacy is and can be!
Being intimate is a rewarding, fun, fulfilling part of being a human being that folks with chronic illness tend to push aside. Our illnesses may never have a cure – but we can always be on a path towards healing. Touching and being touched can be a part of that healing journey.
