Its hard to explain to people. The questions, “why is she not in school”, well, she is sick a lot, “oh, so were mine at that age”…. yes, but not like this, she is different. I don’t want to explain, just leave us alone. We didn’t take her out of school for fun or for attention.
We cant come to your house, I don’t feel safe there, I don’t know how clean it is, or what allergens are lurking. We are not allowed to go to busy places…. I don’t want to explain.
Im sorry we cancelled on you again, we are not lazy, we do want to take part but its really hard for me, for us to stick to things we planned. We need to take each day as it comes.
Im sorry I park in the spot reserved for mother and baby or pregnant ladies with my 6 year old. There are days when she cant walk very far without getting out of breath, she is too big for her push chair and I don’t have the strength to carry her so far.
Im sorry I am sometimes unreliable or wont set things in stone, Im sorry Im sometimes so tired I can hardly spell my own name or listen to you when you talk to me.
I sit and watch over my child at night, measure oxygen levels and temperatures and give medications.
Im sorry she doesn’t look sick. Im sure if she did it would be easier for you to understand. Some of the sickest people you will ever meet don’t look sick in the slightest.
So the next time you ask and I try to explain, please don’t say “oh but she looks so well!” or “oh, she looks fine to me!”. You are not her doctor, you haven’t seen her paper work. You don’t know about the bone pain that sometimes makes her cry walking down the stairs or the nausea that sometimes hits her and is so overwhelming she has to lie down straight away. Or the breathing issues or the tiredness that comes from fighting. I know. I know. She has an invisible illness.
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GlutenFree & Me…. (and everything in between!) 
I have the same illness invisible illness. Boy if you knew everything wrong with me you would be afraid I could give you something, it’s the other way around you can make me sick so easy. Sometimes I wish I had found out when I was younger and gotten diagnosed earlier. Had known my life would be like your daughters and because I didn’t know, I got to live my life somewhat “normal” as a child just sick all the time. I’m 55 now and don’t for a minute wish it anymore. I just found out what I knew all these years anyway now it just has a name and a treatment for it. I am so sorry for you precious child and Mom but God saves is biggest battles for his mightiest warriors!
Don’t know which is worse, people saying nothing at all or the one’s saying stupid comments… 😡👎🏿
I too have an invisible very serious, possibly terminal illness. I understand your feelings. It is so hard sometimes and some people are so rude. I have gotten letters for parking in handicap parking, told off in vicious ways because I sometimes have to use the carts in the store because I either can’t breath or I’m in great pain. People just don’t understand. Unless you have a child, a spouse, yourself or someone very close to you they just dont understand. It doesn’t matter if you explain it sometimes they still dont get it.
I am very sorry that you and your daughter are going through this. It is very tough and exhausting.and at times it does hurt.. I will keep you both in my prayers. Try not to let the words, looks or attitudes of others get to you. Just remember that they are ignorant to the situation. They need some prayer. But you stay strong, keep your faith. much love and lots of prayers sent your way. ❤