I am frequently asked how someone can help a loved one who has lupus. My answer is one that tends to seem like a big let down to the questioner. Just be you but be you with them.
This is usually met with some blank stares or perhaps absent minded nodding meaning to convey understanding. A lot of time people equate the gift of presence as just physically being around someone. Let me be clear, that’s not the gift.
Last week I was out at one of my weekly gatherings that I go to. There was a new-ish member there who was clearly having a rough day. I inquired if she was ok. She informed me that the weather was causing a good amount of pain for her. In my urge to empathize I said “I know how painful weather changes can be. I’m so sorry.” This statement was not received well. She jumped on it immediately, “You have no idea! Until you too have an autoimmune disease you could never know!”
Well, clearly those who know me know that I do indeed have not just one but multiple autoimmune diseases. Yet, as we were in a public space and she was clearly in pain I decided to just apologize and let her be. There was no need to correct her because that could only have brought on an even bigger scene.
Cut to a while later and she overhears that I’ve been through chemo. Which then leads to the awkward question and answer session about what cancer (not cancer) I battled. But if not cancer then what? (Shock!) Needless to say, it was one of the most awkward conversations I’ve had about my lupus because I knew she was having a bad day. And bad days can equate to bad social interactions fraught with misunderstood meanings and hurt feelings. I left feeling a bit defeated and didn’t really feel like returning to be around that gathering again until my emotional defenses were back up again.
Unfortunately I needed to go back to that group several days later. I drove there with anxiety, pulled up and parked my car, and sat there for quite a while working up the energy and nerve to go inside to be with people. So, I took the time to remember why I went in the first place. I’ll see so and so and they always make me laugh. I’ll sit next to that person and we will giggle about our book boyfriends. I know that woman will rush across the room to envelop me in a hug. That guy always takes the time to connect with me. And so the list goes on. Because all of those people (a lot of you) make all the world in living a life like this one. Because you incorporate all of yourself in your relationships and it creates a healing loving space.
Strange as it seems, the new-ish member reached out to me after a few days. She was worried she had broken relationship with me. Of course she hadn’t! I know what those pain days are like. Grace folks. I need it and so does everyone else. I told her as much.
Her response floored me. “You were kind and gentle when I didn’t deserve it. You tried to preserve my dignity when I tried to throw it away. You saw past my anger and saw my pain. I didn’t know people who weren’t my intimate friends could do that.”
Y’all, for years I’ve been working towards living into the best aspects of myself. I’ve been trying to live a life that is marked by the grace I feel from the Holy that comes not only mystically but practically from all of you. And for at least one instance in my life I achieved that. That which seemed impossible was achieved.
And that’s exactly what it means to be you but to be you WITH them. It is the holiest parts of you that shape someone. Your humor, your laughter, your love, your insight, you kindness, your preservation of another’s self, your grace.
It’s quite simple really. Just be you. Which is to say it’s quite difficult and heroic. Because no one else can be you and fill that void. That’s all you.
What can you do? Oh my friends, live into who you are and please invite us to join you along the way.