When You Look at Me

    • Anonymous
      June 24, 2008 at 7:01 pm

      I get Google Alerts in my email when someone posts something on the web about CIDP or GBS. One popped up today with a link to a blog. This is the most touching thing I have ever read. It made me cry right here at my desk at work. It captures exactly the feelings of living with CIDP (or any chronic illness for that matter) and renews my energy to continue staying positive everyday. I hope she doesn’t mind that I am sharing it here.

      When You Look At Me

      * You see my smile…What you don’t see is a choice. I don’t always feel like smiling but I’m choosing to live a life of joy despite this illness.

      * You see a woman who is dressed and wearing makeup…What you don’t see are the days when this just isn’t possible for me because on those days, I hide from you.

      * You see that my hair is “done”… What you don’t see is that even on a good day, raising my arms over my head to dry my hair is nearly impossible.

      * You see my expanding waistline…What you don’t see is my search for healthy food I can actually eat without annoying migraines and nausea.

      * You see a body without muscle tone…What you don’t see is that if I exercise, I’ll be unable to get through the day with my kids.

      * You see someone who moves slowly and cautiously, perhaps even lazily…What you don’t see is my lack of balance and my struggle to even pick up my feet when I walk.

      * You see a woman who likes to wear flip flops…What you don’t see is the pain and discomfort of wearing shoes on most days.

      * You see someone too lazy to cook for her house guests…What you don’t see is I’d rather spend time visiting with you than using all my strength just preparing you a meal. I love having you in my home and spending time with you.

      * You see chubby fingers…What you don’t see is painful joint inflammation.

      * You see a round, puffy face with awkward features…What you don’t see are the steroids that saved my life at one point or the fear of having to return to steroids one day.

      * You see a casually dressed woman…What you don’t see is my constant search for inexpensive clothes without buttons or snaps that are hard to grip or my search for natural fibers that don’t burn my skin.

      * You see my trembling hands and think I’m nervous…What you don’t see is the demyelination occurring in my body that has nothing to do with being nervous.

      * You see my busy lifestyle…What you don’t see are the days I have to stay home in bed.

      *You see a strong, self-confident woman…What you don’t see is a weak woman made strong only through the power of Jesus Christ who is full of hope!

      What do we see when we look at you? What do we not see?

      Blessings, Kristen

    • Anonymous
      June 24, 2008 at 10:39 pm

      Amen… wow, thank you. That blessed me so much.

    • Anonymous
      June 24, 2008 at 11:32 pm

      Thank your for the post

      Jim C

    • Anonymous
      June 24, 2008 at 11:35 pm

      Thats Beautiful!! Thanks for sharing!:)

    • Anonymous
      June 24, 2008 at 11:39 pm

      Thank you so much for sharing! How true that is.

    • Anonymous
      June 25, 2008 at 12:13 am

      So well said! Thank you for sharing.

    • Anonymous
      June 25, 2008 at 7:53 am

      Wow, that was great.
      Thank You

    • Anonymous
      June 26, 2008 at 9:41 am

      It made me cry also, but for my husband who has cidp.He hides his feelings most of the time around friends and relatives. I am the only one that knows how he suffers. I help him button his shirts and put his shoes on. He tells me he could not do it without me. I am going to show him this article . The woman can be replaced with a man except of course for the makeup.

    • Anonymous
      June 26, 2008 at 1:05 pm

      I just printed this out & hope that at least some of my family members will read it. We have not only the 4th of July coming up, but it also the week of our small town’s All-class Reunion. My sister from Indy showed up last night, her daughter & son-in-law & two daughters will begin staying at my house from July 1-10th, & my brother’s family of 5 will be up from the Twin Cities starting July 2nd; fortunately his wife’s mother has a home on a lake 15 minutes from here, so they stay there. But no one cooks except me. Last Christmas it was the same thing & I ended up cooking, serving, & doing the dishes for 5 large family dinners. I didn’t leave the house for 10 days stretch, as I had to rest in between.

      I will not do that again, they can cook, order pizzas, or we can eat out! If only they knew how tired I am all of the time, could be me for just one day. They can see the AFOs & cane I use, but I think they remember the old Ever-ready battery I used to be, but things have changed so much now…

    • Anonymous
      June 27, 2008 at 12:02 pm

      Pam, stick to your guns and put everyone in charge of cooking but you!!! Maybe you could assign them each a day and they have to do all the cooking on that day. I have a friend who does that when her kids are all home. She was spending all her time in the kitchen and never got to visit or play with her grandkids. So now each person is responsible for cooking one day each of the visit and she says it is wonderful!!

      Enjoy your company!

    • Anonymous
      June 27, 2008 at 2:58 pm


      Thanks for sharing my post with everyone. I’m touched by the responses! We’re all in this together!

      Blessings to all of you,

    • Anonymous
      June 28, 2008 at 5:57 pm


      Thank you for this beautiful post. I printed it out and am planning on getting my family members to read it to get a better understanding of what I am going through. Thank you so much!!!!! -Amy-

    • Anonymous
      July 23, 2010 at 2:15 pm

      Could have not been said any better. As women, our vanity tends to get in the way at times, and this disease has humbled us all.

    • Anonymous
      July 23, 2010 at 10:51 pm

      Thank you! These are the words that we cannot say or others will not listen when we talk.

    • July 24, 2010 at 12:34 pm


      Thanks for digging this back up…Gary

    • July 25, 2010 at 12:17 am

      I’m so grateful for your wonderful post. Sometime we just can’t explain or even expect others to understand.

    • Anonymous
      July 25, 2010 at 12:36 am

      Beautiful. Well said. Puts things in perspective, and helps us all through those days when we stay inside because we can’t do anything else. Before GBS I didn’t know CIDP existed either. Now I do, and I pray for everyone who is suffering through these awful diseases. Blessings to all.

    • Anonymous
      August 3, 2010 at 7:32 pm

      Thank you! That is beautiful!

      Love, smitty

    • Anonymous
      August 6, 2010 at 5:13 pm

      Thank-you for the truthful and touching description of a person with CIDP.
      I’ll make copies for my family members, and save myself a lot of explanations.

    • Anonymous
      August 6, 2010 at 5:53 pm

      What a blessing this post is. God Bless You!

    • Anonymous
      August 6, 2010 at 7:45 pm

      I just wish some of my relatives and friends could read this? Because, as we all know, they don’t get it. They don’t mostly ‘get it’ because they are afraid to know that there is something insidious going on. Their fear keeps them from understanding to a certain degree. And, part of them are afraid to even try to know. It’s scary stuff.
      To my docs and friends? I try to keep the ‘grouching’ to a minimum now, THEY don’t want to hear about this all. To the docs?-Just facts about where I am and if things are going uphill or downhill. Totally subjective stuff? But, backed up by some facts [Ihope] After all, docs can’t even DEFINE pain levels? To others? Put on a smart and brave face, even when I simply want to collapse. At collapse point? I just wanna GO home! So I go.
      We get on and keep going! More the spunk to US!
      To each person? Their pain is more important and hurts more than yours. Try to relate and it goes far.
      Hugs and hope!