What I’m thinking when I cancel our plans

Postponing a dinner date or coffee meetup has larger repercussions when you have a chronic illness
By Stephanie Harper    Published on 02/19/2019 at 9:00 AM EDT

Before I got sick, I always considered myself incredibly dependable. I was the type of person who was able to drop everything if someone needed me, who said yes to everything, always ready to take one for the team. I took a great deal of pride in this. In fact, I would say that I wore my willingness to overextend myself on a regular basis as a badge of honor.

Then, my headache started, the one that I’ve had constant and unforgiving for the last five plus years. I got sicker and sicker, my entire body protesting against the simplest of tasks. We started throwing around an array of acronyms (NDPH, POTS, HJS, and others) to explain what was happening. We started digging, are stilling digging, for some kind of underlying cause at the roots of this state of systemic illness I have found myself in these last few years.

All of this is to say that I have to cancel plans. Often. At least much more than I would like. It might be lunch or dinner dates with friends. I have every intention of going when we make the plans, but I wake up and am in too much pain to get up. Or I push myself too hard that day, trying to accomplish something, and I can’t drive, I can’t keep my eyes open. The same goes for meetings and events. I might be scheduled to sing at church and find that I can’t be on my feet without my head exploding. So, I text my apologies and climb back into bed.

I can’t pretend like chronic illness hasn’t taken a lot from me. It has. I’ve lost my ability to work full time and live independently. To write voraciously. I’ve had to learn how to work around my illness, to constantly plan ahead, think about how what I do today might affect my ability to complete my tasks tomorrow. Everything feels like a struggle. It’s exhausting.

And, I’ve had to learn to accept that even when I do everything right, my body might still rail against me and I won’t make that meeting, that rehearsal. I won’t be able to sing. I will miss seeing my friends. I will have to cancel my trip. I will once again be reminded that I am not as reliable as I once was. And, I will wrestle with this. I wrestle with this every day.

Because it hasn’t been easy for me to accept that I can’t always live up to my commitments. I am struck with an incredible sense of guilt every time I have to send my apologies. Will so and so be mad at me? Will people stop asking me to participate? What am I missing?

Chronic illness is isolating. I worry every day that my world becomes smaller and smaller every time I have to miss out on an opportunity. Every time I have to walk away. I worry that someday my whole world will be my house, my bed, and this terrifies me.

I’ve had to learn to accept that even when I do everything right, my body might still rail against me

What’s more, I worry about how all of this affects my relationships. I worry that my friends will think I don’t care enough about them. I worry that people will get tired of dealing with me. Or that I will cancel one too many times and someone will just give up on me completely.

This isn’t entirely fair. I have wonderful people in my life who support me and accept me and my situation. People who are incredibly understanding. This has meant so much to me, I can’t even begin to thank them. But there have also been relationships that have drifted. I feel distance in some of my friendships and I simply don’t know if this is just part of a natural relationship trajectory, or if it’s me.

I think about some of my closest friendships before I was sick. Things have changed. I have changed. I need so much more from people. Help, grace, understanding, patience. I wonder if it’s all too much to ask.

I have to constantly accept that I am not the friend I used to be, that I can’t always be physically present in the way I long to be. No matter how desperately I want to be. I wonder, do they know that? Do they believe that? Or have I simply disappointed people too much? Am I just not a good friend?

In many ways, I think what this all comes down to, the question that rolls around deep within me, is “what will they do without me?” I am scared that I am letting people down, but also that perhaps my presence isn’t always required.

It turns out that I might not actually be the center of everything. That life goes on without me. I can let this frighten me. Or I can let it free me. I am free to miss out on one thing and then step back in and pick up where I left off. The world keeps turning, life keeps going, and I am open to participate how and when I am able. I will try to hold onto that the next time I have to begin a text with “I’m sorry but I have to cancel…”

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