But you don't look sick?

  Have any of y’all seen someone get out of their car in a handicap spot and think to yourself “oh they don’t look like they're sick or disabled to need that spot.” or have you seen someone in the store using one of the electric carts and said something to them along the lines of “Well you don’t look like you need that cart, you don’t look sick!”? Well I have had that kind of thing happen to me more than once and let me tell you it isn’t the best feeling being told how you're supposed to look in order to use the special tools that are there to help you get around or to make things easier on yourself. I didn’t realize when I first got diagnosed that being “sick” had a certain look to it but apparently society has made it that way and it sucks.

I can't even begin to tell you how many times I have been given looks or had snarky comments made to my face about how I should leave things for the ACTUAL sick people. Also I can't count how many times someone has told me “Well you don’t look sick, So why are you complaining?”. Honestly those comments hurt because I shouldn’t have to look sick on the outside for something to be wrong with me. I shouldn’t have to prove to ANYONE that I am actually a sick person with a chronic illness that has NO cure and will NEVER go away. I shouldn’t have to pull up my shirt to show someone my liver transplant scars in order for them to leave me alone about using certain things to help make my life a tad easier on me. 

Life with a chronic illness that isn’t shown on the outside (because it’s an internal disease) is not easy because you are constantly being judged when you can’t do everything a normal person can do but you “look” fine and like you should be able to do everything a normal person can do. My disease causes me to be tired a lot of the time. I actually have to plan my day in my head the second I wake up because even just taking a shower takes energy out of me. If I don’t plan my day in my head I don’t get as much done as I wanted to because by mid day I am in bed exhausted. A lot of people don’t understand my tiredness and tell me to “just go take a nap” or “go to sleep earlier and you'll be less tired”. I hate to break it to you but that doesn’t work for me. I can take a nap all day, but I will still wake up tired as if I haven’t slept in weeks. Only a couple people besides some of my family actually understand and it is sad that people like me have to live in a society where there has to be a certain look to someone who is supposed to be “sick”. My disease also causes me pain. Pain that can be so bad sometimes even the prescribed medicine I take for it doesn’t even touch it at all. Those days are the worst for me because I literally can’t do anything but lay in bed and try to sleep so my brain will shut off from the pain. My disease also has me on medication for the rest of my life and the medication I take has side effects to them that I have to take other medication just to subside those side effects. I take medicine for medicine… That alone is crazy to me, but it’s my life now and has been going on 8 years so I am pretty used to it.

Now don’t get me wrong I am NOT writing about this to get ANYONE’S pity, I never liked being pitied because I am sick I honestly hated when people did that or continuously said sorry to me when number 1 it wasn’t their fault and number 2 sorry does nothing so there is no point in saying it to me over and over again. I’d rather you just talk to me, have a normal conversation with me as you would with anyone else you talk to. Still invite me places or to just hang out. Yes I probably won’t get to go all of the time but it is nice to feel included and to know that you are still wanted to be hung out with even though you are dealing with a chronic illness. Most of us dealing with a chronic illness just want to feel included/wanted just like anyone else would. 

Society has people like me with Chronic illnesses grouped together in this little bubble and labeled that we can’t do things normal people can do so we are excluded. I can’t tell you how many jobs didn’t hire me after they found out I had a liver transplant.. I was being excluded due to my medical history when that shouldn’t matter. I am still human and need/want a job just like any other person. I need mine not just to support myself but to help pay for my medication that I am on for the rest of my life. I also need it so I can have insurance so I am not drowning in medical debt due to a disease I didn’t cause. Honestly the feeling of being excluded due to people finding out you’re sick is one of the worst feelings ever and I hope that nobody has to experience that feeling in their entire lifetime. I promise you I want to keep up with my friends that aren’t dealing with a chronic illness and sometimes I actually can but the times I do I usually end up paying for it a couple days later when my body throws me into a flare up with fevers and horrible pain because I did too much. I have learned now though that those are the things I am going to have to come to terms with and handle it if I want to keep up with other “normal” people. It sucks that my body does that but I can’t do anything about it.

Next time you see someone using an electric cart or getting out of their car in a handicap spot but they don’t “look the part” please before you say anything stop and think to yourself that they may be going through something internally that you know nothing about and actually need the help from the tools that is provided for us to use. Just like my mom said “If you have nothing nice to say don’t say anything at all”. Honestly that's the best thing to live by when it comes to situations like that because you really never know what anyone is going through unless you ask. Please don’t be one of those people who comes up to us and says “Well you don’t look sick!” because the last thing we want to do is have to prove to you that we are fighting something you have no earthly idea about.

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Love, Kayla