Thank you Celiac…. 

Lying in a hospital room with 4 kids and 4 mums crammed in to their childrens beds. Ive been told today that my daughter has a lung disease thats so rare our doctor – who is a lung specialist – has only seen it once before. The name is so long and complicated I dont think I will ever learn it. So tomorrow we have a CT scan to see how much damage this crap caused, and another bronchoscopy (because having had two at the age of six is totally cool) where they will also do a small biopsy.

On top of that she has a lump in her left armpit, blood test results that point towards lupus and major signs of autoimmune activity in the blood.

So the lupus isnt for sure I asked? And no, it isn’t, because lung departments dont diagnose it, but everything points to it. Great. Awesome.

We leave the day after tomorrow, have a week at home, then check in to heamatology and reumatology ward in another hospital in another town (because whoever visits the mosts hospitals before they die wins….right? Not many to go in Poland!)

So yeah. We are cool. All good.

Thank you Celiac. Really. ALOT.

My child has an invisible illness…..

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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