"But You Don't Look Sick"
If I had a dollar for every time I've been told "but you don't look sick" I would be rich by now! I mean, what does a sick person look like?
I'm 38 and I take pretty good care of myself, and I live as a 38 year old should live. Although, I feel 88 everyday of my life, I still try to live life as a 38-year-old. I like to dress nice; I like doing my hair, maybe put some makeup on if I go out somewhere fancy. I do these things because I don't want to look how I feel on the inside. That would make me more depressed; they say if you look good, you feel good.
A frustrating story
I remember a time I had to go into the Social Security Office for an appointment because I receive disability benefits (I have for 3 years now, it took me a very long time to get approved, but I finally did after a long 2 years of fighting for it). So, as I walked in for my appointment, I immediately felt all eyes on me.
As I took my seat next to an elderly gentleman, I said good morning because I always greet people I come in close contact with. First, he did not say good morning back instead he asked me why I was there and why I was dressed the way I was dressed (mind you I had on a skirt that came to my knees and tank top--it was 98 degrees out). I said excuse you sir, I have every right to be here as everyone else does! He said: "You just want our money you don't even look sick you look fine."
I was so angry
It took so much for me not to completely cuss him out! This lady sitting across from us told me don't mind him dear he's just old, and I told her yes I understand that, however it doesn't give him a pass to act rude and ignorant to a younger person that is ill also. When one of the workers heard him being rude to me, she called me up and asked what I was there for. He yelled out: "You're going to call her before me? You brown people sure do stick together."
Again it took so much for me not to cuss him out and just walk away and go about my business. The worker told me I could just mail them the forms I needed to give them, so I left and they dealt with him. I cried in my car and screamed in frustration. I don't want to be sick, I don't want to be on disability, because I'm human I had to let out my anger in a healthy way for myself.
This wasn't the first time I experienced a situation like this and I'm sure it won't be the last time
We must normalize that younger people do get sick also without being judged based off of our appearance. We should be able to go out in public and look nice without being told: "But you don't look sick." It hurts our feelings as I'm sure it would hurt the elderly if we judge them based on their age, and assume they just have arthritis because of their age.
The reality is that anyone can get sick at any age at any time of their life. It's not our job to question anyone else's situation because of how pretty they look or how well dressed they are. I don't want to look like sh** and why should I? I'm a beautiful young lady who likes fashion and shouldn't be judged for it just because I'm sick and society thinks sick people should dress, act, and look a certain way.
We deal with enough physically and mentally just being sick
We need support just as much as the elderly need support. At any age, being diagnosed with an incurable disease is hard. We have to support each other no matter what age we are, no matter how well we dress, or how pretty we are, because people too have also told me: "You're too pretty to be sick." I don't even know how to take that! Is it a compliment or an insult? It doesn't feel like a compliment to me.
When I experience these things in my life, I always try to remember that my illness is invisible, and people can't actually see what I'm dealing with just by looking at me. So while I can somewhat understand being curious, there is a better way to ask someone if you want to know what they are going through. Some ways to ask could be:
"Hey young lady (or man, or person) I noticed that you are here, and usually younger people are not in this office I'm curious what brings you here?"
"I'm so sorry for whatever has bought you into this office you're so young this must be hard for you."
We don't mind having a productive conversation! We can learn from each other. Always be kind to those around you and be mindful that your words can hurt. Treat people how you would want someone to treat you or your loved one if they were chronically ill. We have to come together, not be divided because of our ages.
Do you live with any other conditions in addition to AS? (choose all that apply)