Last week, some friends of mine participated in a lupus event, and they invited me to come with them. I cannot tell you how wonderful it was to see their caring in action. Truly, the benefit of being enveloped by people who accept and care about you is priceless!
I know there are many lupus patients (and others with chronic health conditions) who may not be as fortunate as I am. Certainly, I have heard more than one person say, “No one understands,” or “Everyone just thinks that I’m making it up.” It has to be devastating, when you’re living with a serious illness or ongoing pain, to think that you’re not only alone in the fight, but that those around you, whether family, friends or co-workers, might actually be antagonistic toward you, or do things to aggravate rather than help you.
What makes relationships work, when one person has chronic illness? What makes family and friends rally, or behave negatively? And, if someone lives with a difficult situation vis-a-vis friends or family, what can he or she do about it?
These are complicated questions, as relationships are, themselves, complex. But here are some suggestions from my own experience:
1. We cannot control the emotions of other people, but we can control how we react to them. Early in my diagnosis, I experienced a great deal of loss, especially in terms of friends. Some people simply cannot be around people who are ill. Others “compartmentalize,” that is, they view someone in a specific way (“the friend who goes hiking with me,” “the friend who parties”) and when that person can no longer do what it is they used to do, these narrow-living people drop the friendship because it no longer “works for them.” The losses of friendship that we suffer are sometimes hard to bear. But they also enable us to reexamine the relationships we have and to nurture those that are truly good. So, often, instead of trying to fit a “square-shaped” friendship into our newly diagnosed lives, we have to let go and move on.
2. Early on, I did not try to hide my illness, but rather asked family and friends to learn about lupus with me. I asked my mother to meet my doctors and invited her to ask questions of them directly. I truly answered questions like, “How are you feeling today?” or “What is a flare?” with specifics, so those who cared could begin to understand. If we don’t communicate clearly and honestly, there is no way we can expect others to “get” lupus or any other disease, let alone assist us on the journey.
3. I worked hard (and still do) at making sure that my relationships did/do not become “all about” lupus. Yes, friendships and family relationships are two-way streets, and we have a responsibility to support, lift up, pray for, and enjoy the company of the wonderful people in our lives. If we are perpetually turning the conversations around to ourselves, focusing activities only on what we cannot do, or being a “wet blanket,” then it’s no wonder that relationships will be a challenge to maintain. To have friends, we have to be friends.
4. Lupus can definitely make us lupies rethink who we were and who we might become. That is, for those of us whose diagnosis came at a time when we had “other” plans, we might feel completely at sea and devoid of identity in our new, post-diagnosis lives. I think that’s one reason why relationships might end and others begin, especially in the early stage of diagnosis and life with lupus. Lupus does change us. For example, I’ve found myself much more vocal about my faith, God’s wonderful presence in my life, and ways that that faith sustains me during the bad and really bad days. Some people are comfortable with this. Others are not. But, that doesn’t change how I feel about expressing myself!
When I was writing my book, “Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your Life,” I spoke with a Jewish rabbi about his perspective on faith, spirituality, and living with chronic illness. One of the things he said that has echoed in my heart and the talks that I give about life with lupus is that, just as we wouldn’t eat or drink poison, so too should we be vigilant about any relationships that might be toxic to us. The relationships that undermine our health, well-being, spirit and emotions are dangerous to us, and we need to steer clear (or find a way to protect ourselves) of them.
In the same way, those relationships that are supportive, uplifting, and that bring love, light, and laughter to our lives are true treasures – and exactly what we need to keep our spirits up and our health humming as best it can, even on the worst of those “bad days.”
Blessings for the day,