Thursday, April 13, 2017


I pay attention to myself. I mean I really look at myself from the outside looking in. I started doing it because I felt like people had no idea who I really was. I started wondering what they saw when they looked at me.

It's hard to deal with any type of illness that doesn't stare people in the face. You know that your sickness or your mourning or your pain is there because you feel it. It just doesn't seem like anyone outside of you understands your real battle. What you really go through. Long story short. I wanted to know what it was like to see me. So I was mindful of my walk and my speech. I would video moments in my life and later go back and see if I could tell I was sick.

Guess what? Nope. I mean there were times that I struggled to get up from sitting. There were moments when I noticed I was shaking or had a tremor. I just never saw a moment that JUMPED out at me, no bell, no red light. just a woman with a few shakes and pauses here and there.

It hit me that people really have a hard time understanding the "invisible" illnesses that I deal with. This is why I argue at the store after parking in a handicap space. I often here people say "Well you look good!" And I am a total mess. I get stares in the mall if I am in a scooter but I get stares in the mall if I am walking to slowly. I hoped that by watching myself I could say "THERE IT IS!!!"  But I couldn't.

I really wish people would educate themselves when it comes to "invisible illnesses." I actually can not even stand the term invisible illness. Why is that? Invisible is defined in Webster's as "unable to be seen, not visible to the eye." Now I think I can speak for many people who suffer from illness that our symptoms are not all invisible. The idea of invisible illness is basically making it "okay" to act like someone isn't sick because you can't see their symptoms. I am sorry, that is ridiculous!

Now I am not going to bash the perception of the everyday person that MS, RA, Crohn's, Autism, Scleroderma, Depression are INVISIBLE. The reason being, that is what is taught via the medical world. My issue is with the medical world. I can not believe that anyone would refer to such life changing illnesses that cause such life changing symptoms as invisible. I suffer with a variety of symptoms. Here is a short list. Tremors in hand and face, balance issues, rash on arms, hoarse voice, weakened left side that is obviously weak, slurred speech at times, and a few more. These are the symptoms that other people can see. You know how I know that? I know that because these are the symptoms my husband and children noticed before I was diagnosed with anything. I will NEVER forget my 13 year old asking me when he was 8 years  old "Mommy why are your hands shaking?" He was 8!!!!!

When I first went blind in my right eye it was obvious that something was wrong with my eye, However it didn't scream Multiple Sclerosis. I suffer with very weak vocal chords. I am hoarse 90 percent of the time but that doesn't speak to chronic illness or auto immune illness at all. It just comes across as a little bit of this or that at different times. It takes a full conversation to explain all that is going on with my body. Why do I take chemo? Why do I need a cane? Why can;t I speak? Why does one leg drag? Why do I slur my speech? Why do I shake? Why do I have seizures? Why am I so tired?

Unless I get t shirts made or flyer's printed up. People could always say, "Oh I didn't know she had that," or "I had no idea it made you so ill."

The truth is, our pain and our grief is so real that the word invisible is sometimes insulting. Some people think that the less you see of the disease he less serious it is. But many of us are fighting for our lives right before you and you have no idea, Is there an answer? How can we make people see Fibromyalgia and Lupus are real and painful and can completely change our quality of life. WE HAVE to educate the people around us. Do not just say "I don't feel well.. Tell them details. Show then what you can, a shaky hand or a muscle spasm, or rash.... Let people know that what you are dealing with is REAL. We  have to understand that people have heard of Multiple Sclerosis, Rheumatoid Arthritis, Scleroderma, Chrohns disease etc,.... And actually the illnesses are so visible they are just missing it.

No they may not see the fatigue or the weakness. But the rashes and the swelling are visible. Show them. Explain to them that these are part of your symptoms.

The ability to shed light on chronic illness really does rest in our hands. I know that it's unfair and I don't think it makes sense but I have no issue showing the world what I deal with. Not because their label of invisible hurts me or insults me but because AWARENESS is a necessary move from those of us that feel we are not being seen or equally considered as a real patient, sick, suffering or disabled.

Okay so what am I saying? I am saying we shouldn't have to be labeled as having invisible illnesses. People should want to educate themselves about any illness that effects someone they love. Many people have cancer. You wouldn't know it if they kept their hair and didn't tell you, would you??? Maybe you would if you recognized other symptoms that you really can see. I am not now nor will I ever refer to any illness that I have as invisible. they are all very visible to me and the people around me. I feel like invisible is an excuse to ignore or to lack compassion. "Well you look good," in other words "I don't see anything wrong with you." I want to scream look closer, you will see more than you ever imagined."

Your illness is not invisible. Your child that suffers with Autism or depression, not invisible! What is not visible is the thirst for knowledge people should have regarding illnesses their loved ones deal with. Where is that thirst, desire, need to know when we are trying to be strong and save face so no one is uncomfortable with our reality. I say invisible illness don't exist. And neither does the idea that pretending not too see something means it's not there.

We have to TEACH them that our lives are effected by the things they cannot see, I plan to do an entire workshop really soon on "Invisible Illness", Giving people an opportunity to ask questions and learn. At the end of the day, the reason they don't see us is not because they don't want to. It's because they don't have to. It's our time to HELP them understand us. And see us and all we endure. Pain like ours is not invisible, it just needs to be exposed.


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