WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Tuesday, September 11, 2012

National Invisible Chronic Illness Week

September 10-16 2012


This week supports so many of the families and friends we have made through our 17 year journey with Abby.

So many that identify with this population who even with a diagnosis are faced with a lack of support from friends,family and medical personnel. Many spent years seeking a diagnosis. This population "looks" healthy often enough, yet each struggles with fatigue,pain, brain fog and hundreds of other symptoms that cannot be measured in a lab and therefore often are ignored.

Have you seen someone park in a handicap spot and walk briskly to the store? Before you assume they are abusing that parking spot- maybe they have a disorder with heat intolerance, or one of hundreds of other disabilities you cannot see.

This week is more important to us then Mito Week. This week covers all the patients who have suffered trying to get a diagnosis and treatment. My allergy online family who for some just breathing in the smell of popcorn makes them physically ill for weeks and no one believes them. Or my Lyme friends who fight chronic health issues yet no Dr. in Texas will believe Lyme happens here or even that they need further treatment.. Or EDS friends, or Mito friends, or chronic fatigue friends, or Mast cell friends..or my Mito online family. The literally thousands upon thousands of patients who suffer and suffer from hundreds of disease processes that aren't visible.

Things need to change. If Drs. would change their attitude toward this population of patients so would the rest of the world. I want all of these populations not to fear that the Drs. won't help them, I want these populations not feel embarrassed to ask for help because they look too healthy to ask, I want treatments for these populations, and better yet cures.

I ask that if you see Abby heading in a store or an appt without her chair- Don't judge. That 2 hours out of the house cost her dearly. She walks for you, the reader that might judge her and say she "looks to healthy to be sick." She walks to be normal. She hates taking a handicap spot, because she feels folks will judge she doesn't "deserve" to shorten her walk to protect her health because she agrees with reader,she thinks she looks too healthy to be sick and every time she does to avoid being judged it makes her sicker. She has given up her favorite activity of going to the movies because the popcorn in the air makes her sick, she did not ask the majority to give up popcorn, but don't judge when she won't leave the house.

It would be so much easier to get support,help, and care if those with invisible disabilities had some obvious manifestation of their disease- a tube, a chair, a walker.. but who wants that? Abby saves up her energy to look normal, to avoid being judged. She has always seen it as a mixed blessing, she hates the stares she gets when she uses her chair, but she hates the stares she gets when we park in a handicap spot and she walks into the building looking perfectly healthy just as much. Looking "normal" has given her a huge gift in the past because if she played her cards right she could blend in at school, at the store, with friends- no one needed to know for those moments. It cost her dearly to look normal to avoid being judged. She feels so embarrassed that she pushes her body too far and causes more damage. No child, no patient should feel ashamed,guilty or judged for having an invisible illness.


Laura said...

How do you explain to a teacher that my 14 yr old, 5'8", 155lb son with huge biceps has a hard time focusing in his last class of the day because he is fatigued? He looks so healthy that they cannot connect him missing 1/4 of the school year each of the last 2 years due to illness, with what they see standing in front of them.

Anonymous said...

You write so well.
I get tired of hearing he is fine...Hmm so why have we been doing therapy since he was 12 months( he is 6 this month)..
He looks ok on those annoying weight charts but noone understands how hard I worked to claw him up form the 9th centile...What should I have done let him starve.
Thanks for writing and sharing.

Diane said...

Exactly Laura- As a community of invisible disabilities that destroy the quality of our lives and that of our children, we deserve compassion, medical care and understanding. We need the Medical community to educated first themselves so that we can get the care that is needed, and then reach out and educate the masses. Our quality of life or that of our children's is as destroyed just the same as that of someone with a visual disability. and no compassion. if anything we are treated like we are nuts.

Jo- you said that well! What are we supposed to do, run them to ground knowing that it will damage their bodies forever to just get some help for them? That they won't recognize and provide preventive care is the same as asking us to abuse our children so they can break and justify triage in my mind, By ignoring the massive work we do just to get our children out of bed in the morning.. the calculating of calories,proteins,minerals, tracking BM's, input and output, if they are tired the whole family is on hold- we give it our all to help our children maintain and the only thing the Dr sees is the the "invisible" side of the issue- it is too easy for them to blow us off. I feel your frustration ! Big hugs, and I am sooooo proud of everything you have done to prevent permanent damage and progression in our babies- and I just want to scream at Drs. who triage based on how they "look" instead of their quality of life!

Anonymous said...

I send you virtual hugs, wine and chocolate. You are so on my wavelength today.
Your reply helps alot. We are doing better but again on much work to help, monitor and supply much needed calories, rest etc...
Yet it seems we as Moms try to help the more the outside world likes to see as neurotic, in need of time for ourselves etc...
I learnt much from you and your hard work. Thank you for sharing it with us.

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