To the Friends Who Are Angry When I Can't Go Out Because I Look 'Fine'

As winter fast approaches, so does festive party season. This can be such a difficult time for people with chronic health issues who may not always be able to honor these commitments. My bronchiectasis and connective tissue disease often complicate my social life and, sometimes, I need to remind myself that’s OK. It’s never nice to let people down especially if, on top of being physically unwell, you are being made to feel you are at fault. So, when faced with the dreaded, “But, you look fine to me,” I tell myself this:

Yes. I do look fine. And though I am standing in front of you, I feel broken inside. My body is at war with itself. It diminishes my resources, it depletes my reserves and, occasionally, it renders me completely immobile. And yet, no amount of eloquent cutlery-based analogy helps you grasp this concept when it is suddenly your plans that hang in the balance.

 

I don’t want you to feel sorry for me. I do not require your sympathy; but there is no statute of limitation on your understanding. The fact that I had a good day last week, or was able to go out for a meal with my husband (under a million carefully structured and planned out conditions we have meticulously honed over the years to make something like dinner even possible when my symptoms are in flux) does not give you license to be cold and prickly with me because I am now unable to fulfill our commitment.

Be angry at my illness, by all means, I know I am. It is wild and unpredictable and it has robbed me of so many joys in my life. I have named it, Barold. It’s a gargantuan, horrid entity that has barged into our lives, gobbling up all the things I had hoped for and dared to want for myself. You see, this isn’t something I am doing to you. I am not blowing you off. I am not flaking on you – and I certainly don’t hate you. Please stop sending me messages asking if I hate you. This is something that is happening to me, beyond my control, without my consent, and it, sadly, affects you by extension.

I love you. But I do not owe you my back breaking, bone crushing, violently nauseous, dead on the dance floor efforts to make this illness visible to you. I love you. But the cost of, “At least she tried, that’s what I needed to see” is three days in bed with aching lungs, swollen joints and lymph nodes, blistering skin and searing nerve pain all over my body. I love you. But I am done apologizing and proving myself. I love you. But I will no longer let you lever your affection for me against my physical health.

To anyone struggling with this currently: There are going to be days when your body just won’t cooperate and yes, you may let people down. But if someone tries to shame you over it, mute, delete, no two ticks, palm in face, walk backwards slowly and disappear into a hedge (like that Homer Simpson gif we all know and love) and have a nice, tall glass of: Not today, Satan. Not today.

You are amazing and you are doing enough.

That’s all.

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Thinkstock photo via Wavebreakmedia.