“Wow, you look amazing! That must be a good thing, right? If you look good, you must be feeling good!”
“Wow, you’re glowing! Your makeup and hair look great, and that’s such a cute outfit! You’ve lost weight, haven’t you.”
“Traveling? Wow, that’s wonderful! That must mean you’re doing well, right?”
Every single one of these (paraphrased) statements were well meaning, and there’s not a thought in my mind that makes me second guess that. They made me feel good about myself for a minute, before I let them sink in.
What I really wanted to talk about though is the presumptions made about people who are sick or who may have disabilities that aren’t visible. All of these comments, while kind and confidence boosting, come with their own things that need to be discussed.
Every compliment comes with it’s own level of invalidation or something of the like.
Being sick is very tricky business. On one hand, you don’t want to go out of the house looking like a shmatta (rag). On the other hand, when you look put together, people forget that you’re not well and not functioning at 100% and you allow yourself to overwork so you don’t appear weak or incapable. You want to be validated without having to wear a hospital gown to receive the validation.
My grandfather always told me, “If you look good, you feel good.” Anyone who knew him saw what a snazzy dresser he was. He didn’t gain the nickname “Mr. GQ” for nothing. Even through his slew of medical issues, he always made a point of showing up in style. I wish I could say I inherited that attribute from him, and to a certain degree I did, but in reality… Looking good doesn’t always make me feel good (sorry Gramps). If I could walk around with a fresh face and my hair in a messy bun, in my maxi skirt and hoodie, I would. Considering that is the tznius equivalent of pajamas, I try to put myself together. No matter the effort it takes, even when I end up needing a nap after the process, at least I look good. I actually end up needing a lot of naps.
Okay, fine, I’ll get to my real point; Making comments on people’s appearance is so 2017, right? Right. We need to get with the times and compliment each other on our smarts, on our strength, heck, even on our cars! This is not a plea, or to say that I don’t like compliments. I will take them every day of the week gladly, but we need to think about the compliments we give or the statements we make towards others because we never quite know how what we’re saying impacts them or what domino effect it could cause.
Here’s my mental answer to the three comments that are in the beginning of the blog. It will give you a little look into how thoughts spiral:
1.) Thank you for telling me I look great, that really means a lot to me. No, I am not feeling better. Truthfully, the better you see me look, the worse I am probably feeling, because of how much I am trying to hide how I’m actually feeling.
2.) Like above, thanks. And also like above, that particular day I was ready to collapse. Have I lost weight? No clue. Maybe it’s the lack of appetite for certain foods, maybe it’s result of being on a lot of water pills to help reduce the buildup from the heart failure, who knows. All I know is that you’re unaware of the struggles that put me where I am. It wasn’t a conscious choice of mine. But, I do appreciate the sentiment.
3.) This is actually my favorite question/statement. Yes, thank G-d! I have been blessed to live like a semi retired 65 year old at the young age of 23. With that being said, I have decided to make a point of traveling while I can. The ability to fly and go on adventures may not continue to last, so I’m taking advantage of the opportunities I do have.
Everything is loaded. I try not to take things to heart too much, but it’s hard not to. I’m not going to go around and look like I’m the living dead just so people can remember that I’m sick and I’m not like them. I have circumstances that I hardly understand, so I wouldn’t expect anyone else to understand them.
For transparency, let me let you in on the way mind works:
I don’t want people to treat me like I’m sick, or act like I am my illness. I am still very much the Alex/Ally/Dafna that people have always known, just with a bit more pressure on my shoulders from carrying the weight of life. But, I want the acknowledgement that I’m not okay. I’m the same but different, and filled to the top with conflicting emotions.
Maybe that’s the test. Figuring out a new normal in my relationships and interactions with people. I also need to learn that I can’t take everything to heart. As much as I would like to scream, “Don’t you know how ill I am and how bad I really feel?!” I’m not going to, because having people walk on eggshells around you is never fun. Maybe it would just be okay in certain ways to pretend the illness isn’t even there.
In theme with pretending the illness isn’t there, is the change in mindset–
I’m traveling because I want to, not because each trip could potentially be my last.
I’m looking good because I have a newfound love for myself, and confidence glows. Not because I’m creating a facade to hide behind.
I have Pulmonary Arterial Hypertension, it doesn’t have me. It’s humbling to know that the whole disease is truly left up to G-d (and everything really). From how long I live, to how bad I can feel, it’s all Hashem. It also boils down to the sadness I feel when people assume I’m feeling/getting better. Some days are better than others, but there will never truly be a “getting better” with this condition. It’s going to progress however it will, and I’ll adapt. I know people want me to be feeling better, and I love that so much, but it’s a hard pill to swallow that this is never going to be something that I’m able to get rid of. It’s a hard pill to swallow to know that at this very moment, I’m the healthiest I will ever be.
Humbled, grateful, topped with a healthy dose of confusion and needing a hug every five minutes– That’s who I am. That’s what this post represents. That is real life.