Why I Wish People Wouldn't Tell Me to 'Slow Down' Because of My Illness


I have a favorite line in Cyndi Lauper’s ballad “Time After Time”: “You say go slow, I fall behind; the second hand unwinds.” That line gets me every time I hear it – sort of hits me in the chest and reminds me I’m vulnerable and maybe even a little bit fragile.

It reminds me of how much I don’t want to give up on the career I was building before my lupus diagnosis, even though I’ve changed my expectations for what that career will look like over time. It reminds me of a time when I didn’t have to be conscious of the energy I expended or the hours I put in, a time before I second-guessed committing to events, a time before people openly worried about me.

Now my life mirrors her sentiment: If I do what my doctors and my well-meaning friends suggest and slow down, I feel like I’ll fall behind, away from the life I’ve built for myself, and that’s scary. Worse yet, that I’ll let the people who rely on me down. It creates the awkward situation where well-intentioned advice can feel threatening, and that awkwardness is entirely of my own creation.

When you’re living with an unpredictable disease like lupus, you don’t always want to ask for help for a lot of reasons. Sometimes it’s because you really don’t want to admit that you’re not in the same physical or emotional shape that you were before your diagnosis, sometimes (especially for me) it’s just pure stubbornness or frustration, and sometimes it’s an even more complicated situation, like when you’re on your own in life, or when you fear that a job you rely on could be negatively affected by your admission that you’re sick. When you’re in any one of these situations, the suggestion that you should slow down or take care of yourself, even in the most well-intentioned context, can feel like someone is saying, “You’re not doing a good enough job of managing your life.”

In a recent phone call with a long-time friend, we both mentioned that we had this image of ourselves from when we were younger, healthier. And now we can’t help but compare that image to the way we are now; we grieved (and are still grieving in some ways) our pre-diagnosis selves. We’re trying to find a balance between the fear of “falling behind” our healthier family, friends and colleagues, and accepting that we’re still the same people with some extra challenges thrown into the mix.

I don’t have a good answer for how to deal with reconciling my feelings of guilt or inadequacy with people’s well-intentioned advice that I should slow down or be careful. It is entirely possible to honestly believe you have your stuff together most of the time, but to still feel unintentionally guilty or threatened on occasion when people express concern.

What I’m learning, though, is that talking to my friends, family and colleagues about their concerns and mine is a good place to start (when it’s OK to do that – I know not every situation is safe). But, I think it’s important to say that this happens, and it’s a situation that can be uncomfortable all the way around, yet another “symptom” of the bigger disease process that works its way through our bodies and our relationships.

So, if you’re someone who cares for someone with a chronic illness, please do say that you care and that you are concerned. Say it loud and often, because trust me, we really want to know. But, please understand if we don’t always respond in the expected or typical way. Sometimes we have to take a breath and reconcile some guilt in that moment; thanks for being patient when we do.

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

Thinkstock photo via Stockbyte.

TOPICS
JOIN THE CONVERSATION

Related to Lupus

illustration of woman wearing a hat and lipstick

6 Tips for Staying Fashionable With Chronic Pain

For many of us, having a chronic illness with severe chronic pain means spending days at a time in sweatpants, sweatshirts and with your hair in a messy bun. While that’s fine if you don’t have to go anywhere, there will be times when you will need to leave your house and want to look presentable. [...]
woman blowing her nose while sick in bed

Why the 'Sniffles' Are Scary When You Have Lupus

I woke up this morning with “the sniffles” and immediately felt a sense of dread and a sinking feeling deep in my stomach. Don’t get me wrong – I’m not a drama queen germaphobe looking to create needless excitement in my life. On the contrary, I’d give anything for a little less drama and excitement, [...]
Mount Mauna Kea in Hawaii

How Surrounding Myself With Family and Friends After My Diagnosis Helped Me Heal

October 8th, 2015, life threw a huge curveball at me. “Lupus” suddenly became a part of me that I had to deal with every day. Though this battle has never been one to be won, I still intend on fighting until I no longer can. Over time, I realized what really mattered in life and [...]
woman sitting on a pier looking at a lake

When Lupus Causes You to Feel Internally Torn

As I write this I can feel tears fall down my face and my heart break just a little bit more. I have never felt so torn in my life – physically and mentally. Since my diagnosis I haven’t really come to terms with what I have for many reasons… sometimes my doctor thinks other [...]