This article was written for women trying to cope with endometriosis, but it applies to a much broader audience. Others have addressed the lack of understanding in chronic illness and one of the best is the website “But you don’t look sick” and The Spoon Theory written by the website owner, Christine Miserandino: ButYouDontLookSick.com: A community for support, education, and inspiration. Take a minute to read The Spoon Theory. It is helpful for family and friends trying to understand chronic illness and its very real impact on life and relationships.
Waiting for Normal to Return
Newsflash, it’s not going to happen; even if you find a successful treatment or surgery and reach freedom from pain. Normal shifted when you were not looking. You have been through hell pain-wise, often diagnostic-wise, and sometimes you did not get the help you needed. Life has changed because of these very traumatic and difficult episodes of pain and medical interventions. When dealing with chronic illness, nothing remains the same.
While we wait for normal to reappear, we are often in the stages of grief, loss of the quality of our lives, sometimes our partners, our fertility, other times our overall health, loss of the support of those around us, either because we got better and are no longer the dependent needy person on the couch with the heating pad, or because we did not get better but are now stronger, more knowledgeable, more confident in our decision making as we become more educated. As we work through our losses and our wins if they come, we are looking for our familiar life. Often those around us are looking for our “old self” and they find it hard to recognize and cope with the new, grieving, perhaps stronger, more independent person.
The literature reflects the thinking of several experts in the grieving field, and I have one link posted here: The 5 Stages of Loss and Grief | Psych Central.
Chronic Illness Changes Us and Our Relationships
While waiting, it gradually dawns on us that where we are now is the first step in the new normal in our lives. Sometimes that is uncomfortable because it is so unfamiliar. And if your life has changed dramatically for better or worse, those around you are pretty uncomfortable as well. The dynamics of your interactions are changing, and it requires joint efforts to reconnect on this new level. Sometimes those re-connections do not go well, and you find yourself looking at a parting of the ways, or intense therapy to try to find the common bonds.
I am aware of cases where women were in so much pain and so dependent that family or spouses were continual care givers. When pain and disability were resolved, these same caregivers no longer were needed in that role. This dramatic disruption of the routines in care giving can add inordinate stress to relationships and family life.
When we are prepared for and aware of this potential, we can sometimes talk it through as we begin to see changes take place, or pain resolved. In some cases just accepting that fertility will never be resolved, can be a source of pressure from spouses, significant others, partners or potential grandparents. These folks may not recognize they too are grieving and that what their expectations have been all along may never be met.
My Story: The Way Around
For me, the first 18 months after I retired, I was confined to a power chair, not the life I had dreamed of (fishing the Cascade lakes, gardening, hiking the great Central Oregon outdoors). Pain was a constant companion, sleep just never came. Gradually as the diagnostic hurdles began to give clarity to my situation, it was clear that unless I figured out what this new normal was going to be like, and adapted to it, I would never get out of the chair, nor have any of the retirement about which I dreamed and planned. Actually, this was a very good lesson in: Life is what happens to you while you were making plans.
Physicians now in charge of my case began vigorously working on getting pain and stability under control, still no one saw me casting a fly line or turning a garden bed anytime in my future. I began to read about adaptive gardening, got a power scooter that would work better in garden paths, found an old tractor with a front end loader on it. I could barely even get up on the tractor when I first got it, I was in such bad shape. I found some help to build raised garden beds in exchange for organic vegetables. I found ways to bring water to the beds so I did not have to pull hoses around. This is enough of the story, to try to show, I think, building a new reality with what physical capacity I had left, could maybe restore, or could adapt around. I think you get the idea, that instead of muscling through, which I could not do, I tried to find a way around. I had to let go of a little, though, too. My spine simply will not tolerate fishing, so a little interest in photography began to fill in those gaps.
Create A New Normal
I hope I have at least given you the idea that if things don’t return to normal as you want, you can begin to create a new normal. It may take some experimentation, trial and error, and may even require developing new tools or hobbies, or even a new life entirely. But, in time, you can do it. Let go of searching for the old normal and move on into a new way of being with whatever resources you have or can muster.
About the Author: Nancy Petersen RN (retired) graduated from Tacoma General Hospital School of Nursing in conjunction with University of Puget Sound. She spent 40 years in active nursing and the time since retirement as a volunteer patient advocate for endometriosis patients. In 1984, she literally stumbled into a lecture Dr. Redwine was giving about his research on endometriosis. In time, she came to understand it was a game changer for women with endometriosis.
She along with David Redwine MD established the nation’s first comprehensive conservative surgical treatment program in Bend Oregon, which quickly developed an international patient base.
She spent 12 years traveling and lecturing on Modern Concepts in Endometriosis which arose out of Dr. Redwine’s published research. She consulted with Dunwoody Hospital in Atlanta on the establishment of Dr. Robert Albee’s endometriosis treatment program, The Center for Endometriosis Care.
She volunteers her time on Facebook on several pages related to education and discussion of endometriosis and serves as an advisory board member to the Endometriosis Research Center.