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The One Thing I Will Stop Saying To Myself With Chronic Illness

Over the last few years I’ve been retraining myself to have a healthier relationship with overlapping autoimmune conditions. I finally realized they’re not going anywhere, so I’d better make some peace with them. In an effort to not punish myself for having systemic lupus (SLE) and rheumatoid arthritis (RA) I’ve had to change my self-talk.

Most of it was easy — don’t say mean things like you’re lazy or it’s all in your head. I know that’s not true. But there’s one thing I had been saying that wasn’t so easy to recognize as harmful:

“I didn’t do anything today.” 

I’ve been off of work for the last four years due to these conditions, including chronic fatigue. Then two months ago, I was diagnosed with stage III and V lupus nephritis, an inflammation of the kidneys connected to SLE. I was immediately started on a chemotherapy infusion medication called cyclophosphamide. With the added infusions, I find myself even more fatigued. But because my days aren’t structured with work or school, I’d find myself saying I did “nothing” all day.

I recently realized saying this is a disservice to myself. Firstly, it’s not true. I did something. I took a shower; that takes a lot of energy these days. I took a nap when I needed to. I stayed hydrated. I knitted two rows on a scarf. I may have even baked banana bread. Saying “I didn’t do anything” actually negates what I did accomplish within the limited amount of ability and energy I have to take care of myself.

It’s very easy to get caught up in the grief of what my life used to be; it’s the underlying cause of what’s going on. I was active in my community. I had a fulfilling career in arts education. I was more involved in my nieces’ lives. I began my master’s. I loved it.

Now, just doing one simple task can be my whole day.

It’s quite a change.

But even in that grief, there’s a place of acceptance that I finally get to embrace. Yes, I’m dealing with overlap autoimmune conditions. No, my life doesn’t look exactly like I thought it would at this stage. But why not honor the one task I was able to accomplish instead of punishing myself for it not being more? Do I need a trophy? No, but self-compassion is good to add in the mix. Why not give to myself what I so easily give to others? If this was a friend or loved one, I’d say, “Your ability in any given moment still doesn’t define the sum of who you are. Your heart does. Your soul does. And I see you.”

So I see you, Tiffany. I see you folded the laundry. I see you napped all day. I see you made a phone call or went to an appointment.

You did it.

You did something.

Now take a break.

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