Invisible. Shrouded. Hidden. Veiled. Unseeable.
Sometimes I wish I could wear my illness. Yes, I have a trach, but that could be from cancer, which most people assume is the case. Sometimes I wear an eye patch because of the double vision, but there again… could be an injury.
When I go out of the house, unless I am going to the hospital, I do my hair, put make up on, try to look presentable. Even if I don’t feel good. Even if I have to stop 23 times from putting my hair up because my arms give out. Why? I. Don’t. Know.
Pride I suppose? Just because I feel like crap doesn’t mean I have to look like crap?
So what would I wear if I could wear my illness? A sign that says, “I’m not drunk I have Myasthenia Gravis, that’s why my speech is slurred and I sound like I have marbles in my mouth, and I may walk unevenly.”
Another that says, “If I’m riding with you in a vehicle, please accelerate and break gently. Too hard and my head snaps back and forth because my neck muscles are too weak to hold my head up properly.”
Probably should have one that says, “I can’t breathe because my muscles are severely impaired by neuromuscular weakness, I’m not just out of shape. I also have an unfiltered hole in my neck, so you can imagine the yuck that lives in my lungs.”
And, “Please don’t make “Arrrr, matey” sounds when I have a patch over one eye. I have double vision, probably a severe headache from the double vision, and I’m exhausted. Unless I take the lead, I’m probably not in the mood for jokes.”
I would have a sign that says, “Don’t judge me for parking in handicapped just because I look okay now. When I’m done walking through this store, I may have to stop three times on the way to the parking lot.”
And of course a sign that says, “Please don’t say, ‘But you look so good!‘ For what? Someone with an invisible illness who struggles every day of their life to choose to live and fight instead of give up and die?”
We are out there. We are someone you know.
Ever wonder why the middle age man on the subway is always so grumpy? Maybe he’s in chronic pain.
Ever think that the young woman who “can’t control her child” on the train has an invisible illness that makes her so weak and tired it’s truly a miracle she and her child are even ON the train?
We are out there. We are sisters, daughters, wives, mothers, friends, aunts, grandchildren.
And we don’t want to be invisible anymore.
Kerri Sweeris is a 39-year-old mom to her miracle child, Jacob, who just turned four. She has been blessed with a God-fearing husband who has stuck by her side through the chronic illnesses of myasthenia gravis, fibromyalgia, diabetes, osteoporosis and depression (most of which were NOT diagnosed when they got married!). She trusts God for new strength to face each day. Visit her web site at Living with Chronic Illness
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This is my first year as a member of Rest Ministries and this is also my first year participating in the Invisible Illness Week.
This past Monday I had to make a trip to the post office to mail a letter and as I walked into the lobby I looked over my shoulder and saw a bulletin board. The cork bulletin board contained many different items pinned to it such as business cards, flyers advertising vehicles for sale, information offering baby sitting services, church concerts, tutoring and more.
As I was looking at the different items posted on that cork bulletin board I giggled and thought to myself, as Lisa Copen would say, I’m feeling a little mischievous!
I had just placed a few packs of post it notes in my purse along with a couple of Sharpie pens right before I left to mail my letter. I borrowed them from my daughter because she is “The Post It Note Princess” in our house. She leaves them everywhere and is very fond of the bright, flourescent colored post it notes.
I had a pack of every color. . . red, orange, yellow, neon green, blue, purple, and pink. I began to write messages of encouragement on the first post it note of every pack, a total of seven notes, stuck a push pin in each note and lined them up to form a nice little rainbow in the center of the bulletin board.
I stood back and smiled at my Rainbow of Encouragement. The only thing missing was my camera. I wish I could have taken a picture of it to share at invisibleillness.com.
I quickly forgot about the camera and thought to myself, I have no idea if anyone will take one of these notes, but I am sure that my Rainbow of Encouragement will definitely grab someone’s attention!
I returned to the same post office to mail a package today. I walked into the lobby and glanced over at the bulletin board and guess what?
My Rainbow of Encouragement was gone! Every little vibrant colored, encouraging post it note was missing! I smiled and thought to myself, Thank you God, I guess My Rainbow of Encouragement actually turned out to be Your Rainbow of Hope because at least seven more people who have an invisible illness will come to Rest Ministries and get visible hope!
Invisbleillness.com – “Each One, Can Reach One” . . . and I’m eager to reach many more.
Shari has had Myasthenia Gravis for 16 years and fibromyalgia for a year. She has had many ups and downs with MG, also known as remissions and relapses. She says, “My last MG relapse caused the fibromyalgia and also depression. I was in the deep dark tunnel called ‘life’ for almost a year before I saw the Light. I am happy to say that by God’s grace I am doing much better because I have decided to center my life around God and NOT my chronic illness.” Visit Shari’s Page at the >Rest Ministries and HopeKeepers Sunroom.
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I have been going back and forth in my mind. . . I have this burning propensity to educate. I mean, yes, I went to school to teach, and yes, I will be home-schooling Jacob, but I want to educate people– on chronic illness. On invisible illness. Individuals, churches, organizations, etc. But I don’t know how to get started.
Doug and I were talking about this on the way to Ann Arbor yesterday. I was thinking of contacting area churches to see if I could speak to them about this…about how people with chronic illness feel, especially younger people. About how isolating it is,how frustrating and comdemning it can feel,how absolutely powerless you can feel.
But all those things I just listed come into play. . . how can I schedule speaking engagements when I may be too weak to go? Doug summed it up: I need to find something with no dates or deadlines. The only thing that leaves is writing. Which I’m doing–I’m blogging, tweeting, e-mailing, and all the other e-things one can do with dial up. But it’s not enough somehow. I’m praying that God shows me what to do. How do I get “out there” without leaving home? How can I use my brain without my body’s cooperation?
I’ve never been a girl who liked limits, but MAN have I had to be a quick study. I know I have to take care of myself and my family before I go elsewhere. But I’ve been mistreated, misjudged, misunderstood SO many times that I want others to know what it’s really like. Part of taking care of myself is having a purpose.
I have to get crankin’ on my book. . . maybe that will be it.
It’s so difficult living with this constant frustration. I need to learn to be content where I am, yet I don’t think it’s wrong to strive to want more; to help more; to educate; I really dont’ believe most churches today know how to handle chronic illness. I have been BLESSED, BLESSED, BLESSED with many friends and helpful family members who help me frequently. Because of my illness and its varying degrees of severity, I do not attend church “regularly” right now, not for lack of want, believe me.
WITHOUT PLACING BLAME, there have been several churches that I have been involved with on many different levels that just don’t know what to do. But I’m realizing it’s not because they dont’ WANT to, it’s because they don’t know how, or don’t have the means. They will stand with you, help you for a while, but it seems that chronic illness always outlasts its contemporaries. If a church member who always visits moves away, the chronically ill remain. If the pastor gets called to another church, the sick stay. It’s not easy or fun or even desirous to ask for and need help. It’s frustrating. It can be humiliating. It can feel degrading. It can be embarassing. But the needs remain.
People are busy. Life is busy. It’s demanding. Everyone has a life. Even those with illness. How do you balance needing something but not being demanding or selfish? As a caregiver, how do you balance helping others while living your own life? A conundrum to be sure.
I am open to suggestions to what I can do to educate others, to what YOUR church has in place for those who are chronically ill.
To those who are caregivers, to those who volunteer, who help, who listen, who grieve with, who hold the hand of, who sit with the chronically ill.
God Bless you. You are angels. You are Jesus with skin. You may NEVER realize the good you can do by just being there. Thank you.
Kerri Sweeris is a 38 year old mom to her miracle child, Jacob, who just turned three. She has been blessed with a God-fearing husband who has stuck by her side through the chronic illnesses of myasthenia gravis, fibromyalgia, diabetes, osteoporosis and depression (most of which were NOT diagnosed when they got married!). She trusts God for new strength to face each day. Visit her web site at Living with Chronic Illness
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