**Before you read this post I want you to know if you have said this to me it’s okay. This post is in no way directed at anyone I am just trying to raise awareness and this will probably be one of the longer posts because it’s so important to me**
This post is very important to me and something people with invisible illness struggle with daily. You hear it way too many times “but you don’t look sick at all”. That’s why many auto-immune diseases and things like fibromyalgia are nicknamed ‘invisible illness’ because you don’t look sick. The most interesting thing to me is that no doctor has ever told me, “but you don’t look sick.” Why? Because they know that I am sick on the inside, they deal with these patients daily and there is so much more research now on these type of diseases. I get told by many people that I don’t look sick. It is not a good thing to say to someone who has these illnesses. Yes, everyone loves a compliment from time to time but sometimes I feel I get it out of pity. I get asked how do you feel – sometimes I am honest, sometimes I lie, sometimes I don’t say anything at all and the next thing is always well you look great or you look fine. The thing is I probably won’t look sick so I always look ‘fine’. My disease is shown on the inside, not the outside. In fact, my sister has Type 1 Diabetes and she has to have a pump connected to her all the time giving her insulin. Her life depends on it, but guess what – she looks fine. You would probably not know she had Diabetes until you saw her testing or giving insulin. So many other people face invisible illness just to name a few: Crohn’s, MS, lupus, Sjogren’s, Migraines, Cancer, Depression, digestive disorders, the list goes on and on – there are many. The other day we were at Target and after we got out of the parking spot I told Mom I wish there was another symbol they could come up instead of just the wheelchair because not everyone uses a wheelchair.
Sometimes I hate going out in public because it’s a place that consistently reminds me that I am ‘different’. I get stared at so many times, I get many eye rolls, I get glares, I hear whispers, I see the pointing, I see the confused look. The worst is when we park in the handicap parking spot even though I have a no expiration placard. I have seen people just by their cars staring trying to figure out if I really belong there. The thing is those placards are not easy to get. Your doctor has to fill out a paper proving that you truly, in fact, need one and then you head off to the license branch. So, if you have one it’s legit. I was just recently at a restaurant with my Mom and sister and I am not making this up or exaggerating. The waiter removes a chair for the wheelchair and this whole entire family who was in a booth all turned around and just stared and stared. As we are waiting for the food we laugh here and there and I always just get stared at when I laugh. That always bugs me because guess what people in a wheelchair or with an invisible illness are allowed to laugh and have fun. As the food comes mom starts cutting up my food because I can’t do it anymore I look up and there is a person staring at me, I ignore it and keep eating. I happen to look up again guess what still staring. All I wanted to do in that moment was leave. I don’t understand the prolonged staring I mean there’s a difference between just looking and staring. It’s uncomfortable and sometimes I just want to scream do you honestly think I chose to be in a wheelchair for fun?!. I just wish society understood you can be really sick without even looking sick on the outside. I remember flying last summer and as we were going through security they had to thoroughly check the wheelchair and said it wouldn’t be long. I told them I can’t stand long. Long story short it just sat there for awhile and I said I’m not feeling well I need it back soon. The one officer looked at me and looked at the other officer and said this girl said she needs her wheelchair back because she can’t stand much longer and she was laughing. I was mortified and embarrassed, that time I couldn’t hold back the tears. My mom heard it and don’t worry her and my awesome aunts let the ‘boss’ know and took care of it :). The boss apologized and said that can’t happen and I apologize and she went over and talked to the girl. I wasn’t trying to get her in trouble I just wanted her to understand that not everyone looks sick. That’s a time I just wanted to scream why do you think I am faking and why would you?! If we are being honest I am faking being well I am not faking being sick. That is a saying that so many people with chronic illness use.
I always find it really interesting that kids understand me. They aren’t scared to just be honest and ask me if I am sick or that they are sorry. They are so innocent. When we need a door open kids are usually one of the first ones to run and open the door for me. We were at the zoo one day and this little girl was in a stroller and she looked at me and said something along the lines of oh no my feet hurt too! One little girl at Target said oh no ouchie whats wrong with her? She said it pretty loudly to her grandma 🙂 I wasn’t upset because I heard the grandma say she probably has an ouchie sometimes you just can’t see it. I wanted to give her a hug finally someone who understood and explained! Sometimes kids look at me and they think being in a wheelchair looks fun and they actually tell me it looks fun! They never give me nasty stares or say you don’t look sick. To them, I am just a normal person in cool chair :). Even at work, I have to use a motorized scooter and the kids think it’s awesome (one even put it on their Christmas List). They are compassionate, they give me hugs, they talk to me, they don’t question why I don’t look sick. I am so thankful for my job because that’s what I am surrounded by – I still don’t get how I got so lucky because it’s the perfect job for me. When kids ask what’s wrong I tell them something simple like my legs just can’t walk far or my body just needs this chair to get around and they don’t question me or tell me things I am doing wrong, they say oh okay and they are on to the next thing. It isn’t weird or abnormal to them.
If you go to a big place like Cleveland Clinic you see so many people walking around who look fine but they aren’t fine. They are in pain, they are fighting something, recovering from surgery, the list goes on. They are there for a reason. Now I am going to throw in a little curveball it is true that it is called an invisible illness, and it’s true we don’t look sick but, if you look closely though you can tell it’s not so invisible. These diseases though aren’t invisible on the inside, you don’t get a break from the pain it’s there 24/7, 365 days a year to remind you it isn’t invisible. I get blood tests done a lot and get physical examinations a lot! I look fine on the outside but I haven’t really had a perfect blood test or passed a physical exam in a year so obviously, I am not fine.
You don’t look sick… but I can’t walk very far and rely on the wheelchair and walker
You don’t look sick…. but I have 9 different doctors.
You don’t look sick…. but I had to get referred to Cleveland Clinic
You don’t look sick…. but I can’t wash my hair
You don’t look sick….. but I don’t have a lot of energy
You don’t look sick….. but I can’t drive
You don’t look sick….. but I fall and pass out
You don’t look sick…. but I really struggle with having a good blood pressure
You don’t look sick…. but my lymph nodes swell a lot
You don’t look sick….. but I have spasms and constant pain all the time
You don’t look sick…. but I can’t use the microwave anymore
You don’t look sick…. but I can’t get into a vehicle by myself
You don’t look sick…. but my heart rate gets really really high
You don’t look sick…. but I can’t get dressed by myself
You don’t look sick…. but I can’t carry anything heavy
Try not to tell someone they don’t look sick or you look fine. Try saying its good to see you, I pray for you, I like your outfit, etc…. there are so many better things to say to someone.
Below are two pictures, I went back to my Instagram to pick a picture before I got really sick and I took this picture today. In both, I may look fine but I can tell you the difference. I used to have so much hair. I was so happy to finally have long hair then I got sick and I have lost so much hair. I lose clumps daily (we have had many tests done and I get my thyroid checked regularly) this is symptoms of auto immune diseases. My haircutter and I both decided we had to chop some because I was losing so much it looked weird and my hair was so tangled because it was falling out. I can’t wear any makeup anymore because of my super sensitive skin. My eyes are different as they are tired and swollen. I am pale. I may not look sick on the outside but my whole life has changed because I am sick my body isn’t the same. So next time you see someone in a wheelchair, or parking in the handicap spot, or using a walker, and they look ‘fine’ remind yourself they are probably aren’t ‘fine’.