Right now, I’m feeling especially grateful. My SO’s dad woke up in the middle of the night, multiple times, to stir a roast he put in the crock-pot. He cooked it for extra long on low, and literally got up in the middle of the night, to do this. Why? So that it would be extra soft for me.

I suffer from something called Gastroparesis. It means that my stomach and small intestine muscles are partially paralyzed and don’t move along correctly. It can also be called delayed gastric emptying. I’ve been on a mostly liquid diet since the beginning of June, and there are very few things I can tolerate. The only things on the list: mashed potatoes and mac and cheese. I seem to be tolerating the roast pretty well right now, fingers crossed. I am just blown away by how thoughtful and considerate this was from A.

But this, this act of kindness from A touched me so much that I had to write about it. It, of course, led me to think of other small acts people can do to reach out to anyone who is struggling with any kind of chronic illness.

  1. Send us a text. It can make our day. We often crave human contact and are so isolated because of our illnesses that a simple text checking in on us can make our day.
  2. Ask, “What can I do for you?” Generally, we are pretty self-sufficient. This is by far the best question to ask someone who is struggling, even if they say there is nothing you can do. It shows that you care about our wellbeing and that you want to help, even if there is nothing you can do. The simple offer is incredibly meaningful.
  3. Invite us to events, even though we say no all the time. Even if we can’t make it to an event, we still love to be included. An invite, regardless of whether or not we can attend, is especially significant because so often we feel forgotten by others.
  4. Come to us. Leaving the house costs us a lot of spoons. It’s not even just going somewhere; it’s the whole process of getting ready before hand. If you only have 5 spoons that day, there’s no way you can get ready and go out and meet up with a friend. Please, come to us. Come to our homes, where we can be comfortable and still have that social interaction we crave.
  5. Don’t offer us remedies. Some new ‘miracle cures’ go viral every other day. If someone has been chronically ill, and you think your miracle cure will help us; it won’t. And most likely, we have already tried it. We try everything, anything to get better.
  6. Don’t tell us to “be positive” or “suck it up.” Both, although on different ends of the spectrum, are equally destructive to us. We are doing our best. That should be enough for you.

There are probably a million other things I could think of, but most of all, just be there for us. Sometimes we just need to vent. Sometimes we need to tell someone how incredibly crappy we feel. Most of the times, there’s nothing you can do for us, but just letting us express ourselves honestly and listening is enough for most of us.

Some days are worse than others. Most days are hard. Occasionally we get a good day.   And sometimes, magically, we get a lot of good days. Help us take advantage of the good days by not giving up on us.

We lose so many people in our lives in our journeys through illness. Whether it is mental illness or chronic illness, a significant amount of people just can’t handle our conditions and just suddenly aren’t there anymore… There are so many people we lose.

Humans crave relationships. Humans need relationships.

Just because we are sick, we are not lepers. And you aren’t going to ‘catch’ our illness by hanging out with us.

Be the one who stays with us. Be the one who is there, despite the fact that we isolate ourselves and try to stay hidden from the real world.

 

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