The most common situation I come across being chronically ill is that people don’t believe me, mostly because I am always smiling and laughing when I’m around people. Seeing me smile, people automatically assume that I’m “doing better.”
A few days back, I posted a picture of myself I took when I went out last month and people started messaging me, telling me how happy they were to know that I’m finally getting better. Now, while I know they mean well and are probably just ignorant, it comes off as rude and breaks whatever positivity I built up that day.
It’s so easy to judge someone based on their appearance, but when you know someone is chronically ill, please try to be a little polite while making comments like these. Whenever I post pictures of myself going out, all loaded with makeup and smiling, I get messages like “I’m so happy to know that you are finally getting better,” but when I disappear off Facebook for a long time or share something about my illness, the same people tend to ignore it.
I get that some people are uncomfortable talking about illness and sad things, but if those people really care, I would ask them to please take out a little time to ask me how I am actually feeling, rather than being silent for months only to comment “you look so happy” on one of my pictures.
I have been dealing with severe chronic illnesses from more than six years now and I have spent much of that time on my bed. I’m almost always housebound and bedbound so when I get to go out, even if it’s for a doctor’s appointment, I like to dress up and do my makeup so that I look somewhat presentable.
And because I absolutely love to take pictures, I will give my phone to my mother as soon as I step out of the hospital and ask her to click my pictures, which I then post online because let’s be honest, that really makes me happy. In fact, one of my greatest stress busters is taking pictures and getting mine clicked, so I don’t leave any opportunity in fear of not getting another for God knows how long.
But because people see those pictures, they immediately assume that I’m getting better and when I tell them that I took it just outside the hospital, they look at me as if I’m lying.
Because who would get all dolled up just for a doctor’s appointment? And if I’m really as sick as I pretend to be, how do I get the energy to dress up?
This is when I want to tell them that I have gone to the hospital in the middle of the night, unable to breathe, in my pajamas and with my hair tossing up in different directions. I have spent and still spend days not combing my hair and just using my energy on things that are more important, like brushing my teeth and going to the washroom.
I want to tell them that I go to a hundred hospital appointments a year but I don’t post a hundred pictures because most of the time I’m not even in a condition to make sense of my surroundings.
But there are days when I can afford putting some energy in dressing up and getting a few pictures.
There are days when I like to walk into the cafe right next to my hospital. And when I post my “check in” to the cafe, people immediately message me saying that I never go out with them. I’m sorry but I don’t feel like mentioning my illness all the time. It already takes up a huge part of my life. Sometimes I want to pretend that I am not ill. I don’t always want to write that I went to the cafe after a dreadful appointment or after crying my eyes out at the doctors’. Because that’s not important.
I personally like to focus more on the positive things of life, so even though I have accepted my illness, I try not to let it poke its ugly head in everything.
I like to post my picture in the cafe, laughing at something and then leave it at that. No explanations. Why should I feel the need to explain?
When you have a chronic illness, it’s just about managing. Some days you can’t get out of bed while other days you can go for a little walk or even run.
And that’s completely normal.
Living with a chronic illness, we all have both good and bad days. We have limited spoons (energy) which we distribute into tasks that are more important.
And everyone’s priorities can be different. That’s what makes us human.
I am always up for raising awareness and I really love when people take out time to ask something about my illness (even though it rarely happens). I’m always open to questions because that’s the best way to raise awareness about all the rare invisible diseases that affect millions of people every day.
But when people automatically assume things and fight with me because I went out yesterday but when they asked today I refused, it hurts.
It really hurts.
It takes me a lot of time and effort to plan for an outing and even then it’s almost always cancelled because my body decides to give me last minute surprises.
There’s one thing I want to tell people – please, please try to understand because all we chronically ill people need is understanding, support and kindness. Please know that we are doing our best to live this life, irrespective of what it brings us.
And never ever judge someone on the basis of how they look.
You never know what hides behind that smile.
Find me @its_little_ayra on Instagram where I share my chronic illness journey and the ups and downs that come with it.
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