I've been humming and hawing over talking about this part of my illness. For better or worse here is my unfiltered thoughts on the topic.
First, let's define chronic for the people in the back.
According to WebMD a chronic condition is, a human health condition or disease that is persistent or otherwise long-lasting in its effects. The term chronic is often applied when the course of the disease lasts for more than three months.
I bring this up to educate. This week I had an interesting experience. Below is what transpired.
I teach Yoga on Saturdays and Sundays online. I find it helps soothe my soul, and the participants seem to also enjoy getting together. On Sunday my Crohn's (Chronic Illness) was acting up which left me in the bathroom the entire day. I had to cancel my yoga class. Many messages came through "Get better soon" (I am not discrediting this message because THANK YOU for caring enough to say anything at all) However, about 30 mins later I received a private message from one of the members of my class asking what better wording she could use, as saying "Get better soon" didn't sit right for her due to my chronic disease. Honestly, I was taken aback. Normally I trudge through the motions and smile through the sentiments, but her question got me thinking because there are better ways we can respond to the chronically ill.
Just like she said saying "Get better soon" is grossly Inaccurate to say to someone in a chronic state. Here's why. Get better soon naturally assumes that I will get better. Though I may have better days my illness will not resolve. So just like her and I talked about, here are some suggestions if you do NOT have a chronic illness but maybe know someone who does.
Rather than the above, let's try some of these.
"Thank you for taking care of your body."
"Is there anything I can do to support you"
"Remember it's okay to rest."
"I appreciate you taking the time you need to help your body"
"You are valued, and I'm here for you"
"Make sure to stay hydrated" - this is one of my love languages.
I can't speak for all chronically ill people, however, I can speak very clearly for myself when I say, it's incredibly offensive, insensitive and downright rude when people say things like,
"Oh you're still sick."
or
"What did you do to cause this"
or
"You don't look sick"
or many other things I won't dwell on. Learning language that is supportive of other people's circumstances takes time, and a buttload of hard work, so it's alright if there are a few mess-ups. This world wasn't made for the disabled, the chronic, or the people who sadly don't fit the mold, and therefore we don't know what to say or how to act around Chronically ill humans. You were never taught, and that's okay. If you don't suffer from a chronic condition, it's hard to empathize with someone who does and thank Odin for that. Because you don't have to deal with daily pain, sickness, or other awful things.
For me personally the fact that you are trying is more important than anything else. If you try to text me to reach out if you message me to see how that day is. If you allow me to have a safe space to talk about what's really going on, that means more to me than any of the well wishes in the world. Life gets busy, and we all go through so many things that can cause our bubble to be so self-centered. I'm at fault for that and I know many others are too. But if you don't have chronic pain or an illness, remember that you can't possibly comprehend what we are going through (and I'm SO HAPPY for that). But because of it, we need a little nicer words, a little more support, and during a flare, you may have to put a little more effort in to carry the relationship. During these times, you also need to watch what you say, because what you say can hurt feelings, damage relationships, and even cause deeper depressions.
I've had many people come into my DM's offering a cure, a new tactic, or some type of diet. Once again while these are all well-meaning, please remember that if you do not have a medical degree of some sort, that your offering once again comes across as completely tone-deaf. As someone who SUFFERS from a chronic illness please don't mistake my niceness as acceptance for your unwillingness to change, learn or adapt.
Let me give you a little snippet of what it's like to be chronically ill.
Yesterday I woke up at 5:30 in the morning in intense pain.
I went to the bathroom where I stayed till 6:30.
I then crawled back into bed with my heating pack on my body.
7:30 came and it was back to the bathroom.
9:30 and I was thinking I needed food, until I thought about it and my entire body was repulsed, and I almost threw up.
10am (ish) my eyes started to swell, turn red, and then my ability to focus my eyes left.
10:30am another bathroom trip.
11am I noticed I needed to drink but I knew it would cause more pain.
12pm I drank so therefore I'm back in the bathroom.
Exhausted from all of this, I laid on the couch, with my heating pack hoping to calm things down.
1:00pm another bathroom trip.
2:00 pm bathroom again
3:00pm my butthole hurts terrible and I cry on the toilet.
4:00pm I still can't see well, and my entire body is cramping because of the loss of water.
5:00pm I'm on the couch, and finally starting to feel slight relief from not moving or opening my eyes for the last hour.
7:00pm my partner gets home, makes food, the smell makes me run to the bathroom and dry heave. Then I come back, eat a few bites because I need to.
8:30 -9:00pm I'm in the bathroom in pain.
9:30pm I take an anti-nausea (which also kind of knocks you out) so I crawl into the fetal position with my hot pack on my tummy putting my cold hands on my every hot painful eyes.
End day. ohhhh and during all this.. I was also working.. because I have bills to pay and insurance to keep so I can get medication to make my disease THIS GOOD. Yes... this good. This was an AVERAGE day for me. This is NOT in a flare. Before medication is was 15-20 bathroom trips a day on average, with blood, puss, and so so much more pain.
I understand that many people don't see the sick side of me because I don't let it show. I try to be healthy and happy. I keep a positive attitude, and I keep fighting (because I have to not because I'm strong). I put on make up to cover the grey undertones of my skin, I wear baggy clothes because my stomach can't handle pressure. I always know where bathrooms are, and all of that is EXHAUSTING not to mention humiliating at times. It hurts my feelings every single time someone doesn't take the time to understand what I'm experiencing. That being said it has caused me so my teary moments (the good kind of tears) when days like last Sunday happen. When someone asks, because they want to be better. When someone stops by and just hangs with me at my house.
Once again I say all of this to educate, help you understand, and maybe be able to give support to someone who is chronically ill. This world needs more kindness, and kindness starts with you. I can't speak for all kinds of chronic pains, but for mine, it hurts when you ask what I did to cause this because I didn't do anything. This is a disease. I am actually doing my best to monitor and live a life where I can be as healthy as humanly possible.
So here's my rule of thumb. Whatever you are about to say to me, if you wouldn't say it to a cancer patient, DON'T SAY IT TO A CHRONICALLY ILL PERSON.
