How Lupus Changed My Relationships for the Better


I was diagnosed with lupus three years ago after a having series of life-threatening cardiovascular events that seemed to come out of nowhere. Your whole life gets turned on its head: you’re a healthy mom, professor and wife one minute, and a patient the next. When I think about it, the hardest part of the last three years has been control.

I’m a planner, and when you’re a planner with a chronic illness, life becomes all about controlling your disease for as long as possible – you want something to rely on, something to be stable. But that need to control your disease quietly seeps into other aspects of your life, too. As I began working my way through all of the testing, the diagnosis and treatments, I changed: I became a worrier, about my health and my relationships. Before I knew it, I had a full-blown case of lupus with a side of anxiety. But there is a silver lining in those changes: living with lupus and its treatments is teaching me how to let go, and that has been good for my relationships, and for me.

When you can’t trust your own body, you begin to learn that there are lots of aspects of your life where control is more of a negative than a positive, and letting go is a big step toward feeling better. Think about it this way: we can’t control how our disease(s) or condition(s) will make us feel from day to day, and it’s really easy to let worry and anxiety take over because we’re trying to control what we can’t. What if I can’t work this week? What if I have to cancel plans? What will people think, because I was fine yesterday and I’m a wreck today? What if I have a medical crisis in public? I’m learning that my relationships are the same way. I can’t (and shouldn’t) control the actions or the feelings of others, but I can change how I react to them, and how I see myself.

black and white photo of a woman's arm with a bracelet that says 'live' and an IV in her arm

Illness puts stress on nearly every aspect of your life, and everyone reacts to stress differently. So when people seem to pull away, or when they seem to be treating you differently, you can’t let that affect your own sense of worth. I’ve spent a lot of time worrying about losing the people I love, but ultimately, I’m learning they have their own way of dealing with stress, and I can’t let their actions determine how I feel all of the time. I have to let go of the worry and deal with things as they come.

This may seem a bit selfish, but it helps to remember that I still love my life – that I can still be happy with many aspects of who I am and what I do, despite the major challenges. And most importantly, I’m learning that the people who are meant to be in my life will support me in whatever ways they can. It’s up to me to decide if that is enough, and it’s up to me to make changes if it’s not. My relationships are better now because I’ve relaxed: I don’t cling, and I’m learning to stop worrying about whether people will stay.

So as for control, you don’t need it to be settled and happy: things are going to happen, and you can deal with the good and the bad as it comes. Feel your feelings, move forward, and that’s OK. You do you, and the people who are able to love you, will.

We want to hear your story. Become a Mighty contributor here.

TOPICS
JOIN THE CONVERSATION

Related to Lupus

Woman holding red heart in her hands

How Love Keeps Me Happy Through My Battles With Illness

“What is making you happy?,” my friend asked. I suppose given my circumstances of walking the death line and all, that’s a fair question. Really, despite my long-winded response, it’s a very simple answer. I came to a place where I feel like the me I am right now is enough and I let go [...]
woman standing outside enjoying the sun in the mountains

How Gratitude Has Helped Me Learn to Live With Lupus

Moving in with my parents at age 32 is not something I ever thought I would be grateful for. However, after one year of countless doctor appointments, one urgent dash to the emergency room, seven nights in the hospital and a discharge letter accompanied by a pharmacy bag full of seven different types of medication – [...]
woman wearing a hoodie and standing outside near a lake

When I Tell People What Chronic Illness Is Like and They Ask, 'How Do You Do It?'

Recently, I was asked by my coworker how I was doing. I used my usual line: “I’m OK…” With my fake smile and quickly turning away, I can usually pass by without going in depth about how awful I really feel that day. She stopped me mid-step and said, “No, how are you feeling today?” I told [...]
woman sitting on her couch looking upset

What You Should Know Before You Judge Me for Being Home All Day

I gave up working over five years ago, five very long and overwhelming years, even before I had an “official diagnosis.” I knew something was wrong and I knew having multiple organ removals and multiple back surgeries in less than five years was not “normal” for someone in their early 20s, regardless of what the surgeon [...]