Relationships prior to fibromyalgia involved who I was as a working woman, a community activist, and a “type A,” goal-oriented person. My friends were fellow business owners, clients, and high energy exercise buddies. As my condition deteriorated and I sold my business, my relationships with everyone in my life changed. Everyone I knew was affected by my new lack of energy and brain fog. Medications that I took changed my personality. Some days I was very depressed and moody, while other times I appeared well, but was still experiencing flu-like pain throughout my body. My immediate family had to learn how to take care of many of the tasks that I used to do, such as shopping, cleaning, or organizing vacations.
Back in 2000, not long after I was diagnosed with fibromyalgia, I was reading a book about how this illness can affect all your relationships. Being a newly diagnosed person, I read the chapter with some skepticism and laughed with my then-husband that we would make it together through this troubled time no matter what!
Now years later, after going through my third divorce, I live with a kind, compassionate, supportive boyfriend and his two daughters, ages 9 and 13. While many of my old friends and relationships are not part of my current life, I feel blessed to have created new and fulfilling relationships with people who know me for who I have become. With my daily limitations and ongoing focus on living well with fibromyalgia, I have developed a new way of seeing life: finding simple satisfaction in doing the family laundry or taking my dogs on a walk. Living well with fibromyalgia and maintaining healthy relationships are among this illness’s silent challenges.
My husband was especially shaken by my inability to be as active socially as a couple. Many times when the time came to go to a party or social event, I did not have enough energy to go, so he would go without me. We had been avid bike riders, kayak buddies, and travel partners. All of those activities had to be toned down or eliminated due to my disability. I could not be around bright lights, noisy parties or with anyone who was consuming alcohol or tobacco.
As my world became smaller and quieter, many of my relationships slowly ended.
Marriage counseling unveiled my husband’s unspoken desire that I be the same go-getter, fun-loving, athletic, party person I was when we met. My inability to be that person and his inability to make the changes to our lifestyle that I needed to survive were the factors that ended our marriage. We still loved each other, but we could not live together. So, after a very traumatic, emotional time we separated. I filed for divorce, and six months later I was single again After a year of mourning, I was ready to try dating as a middle-aged divorcee with an energy-depleted body, a cabinet full of medicine and, for the first time in my life, low self-esteem.
So: when to tell a potential dating partner about fibromyalgia? For me, that was a process of becoming comfortable with discussing my experience with the illness. Most people I meet don’t know anything about fibromyalgia and, since there are no visible symptoms, it sometimes comes as a surprise when I share the details of living well with this illness with a new acquaintance.
Over time it became clear that it was better to be upfront in the beginning of a new relationship about my limitations, so that any new friend could determine whether or not they can handle me cancelling a date on short notice due to fatigue, a migraine, or a pain episode. I tended to drive my own car to events/dates so that I could leave if I start feeling overwhelmed or needed to rest. I keep my daily commitments to one appointment or an individual one-on-one date. I found that trying to have a doctor’s appointment and a personal date on the same day required too much energy. I keep phone calls to a minimum since I find myself having to raise my energy to interact on the phone. I prefer chatting via email or in person.
Recently I ran into an old high-energy friend from my pre-fibromyalgia life, and we decided to meet for lunch. At the beginning of our time together she shared with me that she is no longer running her corporation due to some health issues of her own. We quickly compared lifestyle notes, and I realized she was still actively in the “busy mode” of getting as many things done in a day as she could; I no longer push myself to those extremes. While we had a nice time together, I realized that I no longer wanted to spend time with people whose sense of self-worth came from accomplishment versus just being. This was a major “aha” moment for me to see how far I have come from being goal-driven to just being me.
Amie Young was diagnosed with fibromyalgia in 2000. She is currently writing a book about her personal experiences of using alternative health practices to live well with fibromyalgia. She lives in Arroyo Grande, Calif., with her three dogs, two cats, and a canary.