Looking For Ways To Support A Loved One With An Invisible Autoimmune Illness? In Honor Of National Caregiver’s Month
If you are in a committed relationship, there is an expectation of “sticking it out” through tough times regardless of whether or not you actually nervously sputtered out the words “in sickness and in health” at a wedding ceremony. And yet, faced with a challenge such as chronic illness, many people feel suddenly inadequate as a partner. It’s no wonder, really; while much attention is given to illness, little attention is given to the often significant shift in family dynamics that occur around illness.
In this great article on the subject, “My Partner was Just Diagnosed with a Chronic Illness… Now What?” from TwoofUs.org, the author mentions the importance of communication. Honest communication between partners is paramount in facing the challenge of an illness together, and so both partners must learn to ask for what they need, respect each other’s changing needs and say when they’re not able to provide something for the other.
However, if you take this idea of communication and also apply it to the multitude of other relationships in your life, you may find that, just by talking honestly and clearly, you can build a network of information, strength and boundaries that will support you, your partner and the partnership in ways that no two people can accomplish on their own.
A successful scenario for a couple might include:
- The ‘healthy’ partner understands how and when their partner will ask for help – sometimes this can be difficult when the person with the chronic illness may not look or act “sick”
- Partners agree early on what medical information will be shared and with whom
- Partners discuss with their respective families what they need and what they’re not able to accommodate (“we’d love to join you for dinner once a week or so, but Mary is not able to talk on the phone everyday”)
- Partners maintaining and nurturing their own friendships outside of the marriage for support/entertainment/stress relief
- Partners attending medical visits together so all information is clearly understood by both
- Partners acting as a unified team and speaking honestly to their children
Even if you are years into dealing with your chronic illness, it’s never too late to begin talking about these important points. One of the challenges with autoimmune illnesses in particular is the periods of flares and remission, and not knowing the duration or timing of each, while other life events are happening for children, aging parents and other family members.
Also difficult are onset of new conditions, or treatment changes that can affect the entire family. One example is the health provider’s recommendation to make a significant diet change – you and your partner will want to talk about how the family can support this shift, either by all going on the same diet, or by making other food choice compromises, such as changing the location of a favorite family restaurant so that everyone can participate and enjoy their time together.
Obviously, all of this is easier said than done. Partners often tiptoe around each other where illness is involved so as to avoid creating more unpleasantness in an already tough situation but this is sure to backfire at some point. Since relationships are a constant work in progress, anyway, you might as well begin this journey through chronic illness by honing a skill – honest and clear communication – that will serve to not only ease the burden of the illness but, perhaps, improve and deepen your love.
About the Author
Kathi Kuntz, RN, MSN holds a Bachelor’s and a Master’s Degree in Nursing from the University of Pennsylvania. Her specialization is in the healthcare of women and her graduate research thesis was on autoimmune disease in pregnancy. She has over ten years of clinical practice experience. Currently, Kathi is on an adventure living and traveling with her husband and two young sons in Australia.
Originally published November 17, 2012
This blog post was originally published by AutoimmuneMom.com, written by Kathi Kuntz, and first published on Nov 22, 2014.
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