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'Get Well Soon' and Other Misguided Well Wishes for My Incurable Disease

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I appreciate people’s prayers and well wishes. I really do.

What I don’t appreciate is the way that some people often use platitudes to address my chronic, incurable disease.

I believe “Get well soon” and “I’m praying for God to heal you” and “Feel better” are all kind things to say to someone who actually has the capacity for wellness. For many with chronic illness, we do not have that capacity for wellness.

Don’t misunderstand.

We want to be better/healed/well.

We want that more than anything.

But we also have to learn to live with and accept that we will not likely ever be better/healed/well. And it can be very hard to accept that.

I spend a lot of time attempting to cope with the fact that my body will never be what it once was. I might be able to find a sort of personal best, but I won’t ever get back to the body I lived in when I was 20. This is my body now, my life now, and my capacity for wellness now. I can’t get better in the sense that I return to my pre-illness state. I don’t have a cold — I have a life-long, debilitating, incurable disease. I won’t ever be well in the terms that most people are wishing me well. And your statements wishing me well, healing and betterment are reminders. They are reminders that I won’t have what you are wishing me. But they are, even more significantly, reminders that you don’t understand my situation. Telling me to get well soon shows me that you don’t know how to, or don’t wish to, address the fact that I cannot be well. It makes me feel that you haven’t heard me or understood me when I explained to you that I have a chronic condition that won’t go away.

It makes me feel that you are dismissing the severity and the scope of my illness. It causes me to believe that you don’t really care all that much about me. The people who seem to care most and to understand best the situation I am living in do not wish me well. Those people sit with me in the lament. They let me feel terrible about my situation. They let me be in a sorrowful state, and they accept alongside me the fact that I will not be better. They accept this new form of me, unlike the Christy they had previously known but yet one and the same. Because my body and mind are different, but my spirit — my soul — is the same as it ever was.

I am not less me because I am not well. I am simply less well. And that doesn’t have to be a problem.  It doesn’t need to be a barrier and put a wall between us. A friend suggested a couple weeks ago that a bunch of us hop into a vehicle and go canvass for a presidential candidate in another state. My response was an immediate “Yes!” And then I added, “but one of you may need to push me in a wheelchair at some point in the day.” And that statement put a strange sense of disillusionment into the air. Some of the people around me are still not ready to accept that my life today includes not being able to walk door to door and canvass for any length of time. I’m sometimes not ready to accept that. I almost forget, at times, that my body isn’t capable of things that it once found easy. And because I know that I can forget at times, I allow for others to forget, and I give people time to process or permission to change the subject, because I understand how hard it is to let go of the concept of well Christy and embrace unwell Christy. But you and I must embrace unwell Christy in order to keep going. We need to accept that things are different, and that I may never be or have or do in the ways that I used to imagine. I may never improve. I may get worse. And that needs to be OK.

That needs to be OK because it is the truth. I need to face it. You need to face it. We need to face that I am not going to be wished or prayed or hoped into a better body without disease. This is the state of me. This is how and who I am. And to love me is to not place conditions upon me, so to love me is to love me in this state — this broken, sick, and dependent state. Wishing me well won’t make it so.  Prayers are welcomed, but not expected to change my physical situation much. Wanting better for me, won’t necessarily make me feel better. What helps in this situation is understanding, grace, and an ability to sit with the disappointment and the frustration and the sadness and the struggle that happens in my life.

When my daughter was a child and would celebrate her birthdays, she would always make a list of people to invite. And while I assisted her in making that list, I would say that the people she invited to her celebrations should be the people that would also show up to be with her when difficult and sad things happened. You only got invited to the joys if you were willing to cope with the sorrows. And I still remind her at times of that condition for making the invite list, because it is a good way to measure the love and loyalty of your friends. This concept also applies to how you measure the care and compassion of those around you when you have chronic illness. You only get invited to the joys if you are willing to cope with the sorrows. You are part of the solution only if you can accept and live through the problem. For me, the problem lives in and with me for the rest of my life. That is a lot of problem to live through and accept. But it can be done. It may be done only by a few, but that is all right. I cling to those few and let go of the rest.

If you want to help someone with chronic illness, don’t tell them to feel better and don’t wish them well soon. If you want to help someone with chronic illness, be that person who lives through the problem and offers that love and loyalty.

Be the person who accepts the unwell friend, as they are. Be the one who says, “I’d be happy to push your wheelchair, as long as you come on the trip!” Be the one who says, “I know I cannot do anything to make it better, but I am here for you anyway.” Listen. Lament. Love. But don’t wish me well.

Because I won’t be well. I will be chronically ill.

You can read more about unwell Christy at Learning to Be Whole.

Originally published: August 9, 2016
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