Tuesday, September 8, 2009

Invisible Illness...Some of the Things You Don't See

Invisible Illness Awareness Week in next week....September 14-20. I am so thrilled to see exposure to this topic, because so many people are covering it on their websites, blogs, facebook, what have you...There is such a stigma with invisible illness. When you don't wear it on your sleeve, or if you're not in a wheelchair or on crutches or limping or drooling...then you must be fine, right? Especially if you have an invisible illness and are overweight. That's pretty simple, right? You're just fat and lazy, and if you lost weight, you'd feel so much better. Probably even be able to get off that medication! People don't see under the skin. They don't see the chronic pain, physical AND emotional, that comes with many invisible illnesses.

They don't see the bills. They don't see the medication, they just see the side effects (and wonder why we are so grumpy, tired, angry, hot, cold, bloated, weepy, hungry, etc.) They may not understand that just being there for someone and trying to keep them lifted up can literally save their lives. Many people with chronic illness, whether invisible or not, struggle with depression. Some get suicidal. Knowing this, knowing that YOU can make a difference...

People may not understand how helpless we feel. We want to help YOU, and others too, but our bodies just won't cooperate. Many times our minds are still 100%, but our bodies have betrayed us.

I wish that I could wear my disease sometimes. I wish that the world could see when I'm really struggling so they wouldn't judge me. Other times I want to hide it. I want to rip my trach out and just be normal and pretend and try as hard as I can to just fit in. I pretend a lot. I'm sure others with invisible illnesses do as well. We get tired of hearing platitudes and "Just have faith," and "Just believe more" and "God is faithful..." so we just smile and say we're doing well when we're really just broken inside. There are moments when we push ourselves to the brink of collapse to just live life. Because we are so sick of sitting on the sidelines.

If there is only one thing you remember from anything I ever say, I would want it to be this: Remember those of us with chronic illness, invisible or not. Remember how isolated we feel sometimes. Remember that my mind is still normal, and I'm still me, whether my body is cooperating or not. Remember that I still like to have friends, I still like to go out, I still like to laugh and have fun, even though I may not be able to. Just remember me. That's all.

Just remember.


Joanna said...

Would it burst your bubble to know that "normal" people, whatever that is, struggle with everything you put? We're suppose to be normal and yet the struggles are still there.

Very well written. We're all in it together.

Kerri said...

Nope. This applies to lots of things...overworked moms, singles who are lonely, the elderly... it's just super important to think of others and remember...we all have issues...{some of us just a few more than others (hehehhe)}

Leigh @ intentslife said...

What an eloquent educator you are! I'm so proud of you. :)

Pam said...

Kerri you have a great way of saying exactly how I feel!
I have been told the same exact things that you mentioned about the
weight, I am on too much medicine...trusting more...so nice to know that I am not alone in how i feel.
I am not crazy.
Last week I over did at a family thing and ended up on the floor and Rachel had to take me home...that was no fun at all, I should have known better and left when I knew I had enough...but I do get so tired of not being able to DO what I would like to do...especially hard when others try to "help" and say oh just stay we will take you home...you can rest here...I need to thank them and then do what I need to do what is best for me...I just do not want to miss anything or have someone go out of there way for me...thanks for letting me know how you feel...so I am ok knowing that I am ok...well sort of!