This post has been weighing heavy on my heart and I have gone back and forth about writing it. I have decided to share my thoughts in hopes that it will open eyes and help people show more compassion to those with ‘invisible illnesses’.
Since Paige has gotten sick we hear often how ‘good she looks’ or ‘what a good day she is having’. And people base this just on her outward appearance. They have no idea what is going on inside her. Or how hard she is fighting to look and act ‘normal’.
Because some of Paige’s symptoms are very physical, like her not being able to walk, when those aren’t visable people assume she is having a good day!
On Saturday at Justin’s party Paige was told all day how good she looked and what a great day she was having. And people have continued to comment on her pictures saying the same thing. Let me tell you what you didn’t see.
When Paige’s alarm went off at 8 am to take her medicine she physically could not get out of bed, her sister had to take her medicine to her. At 9 am when it was time for her second dose of medicine she stumbled to the kitchen and needed help opening all of her medicine bottles, her hands were not working and she could not open them on her own. She stumbled back to bed because she was so exhausted she could not keep her eyes open. She got up around 10 am to take medicine yet again and she was gagging on every pill. She sat at the table for nearly 30 min trying to take her medicine. She told me her body ached and we rubbed her down with her pain lotion. She had to gag down her noon time medicine also and this time was harder because her face was also contorting. She had no control over the muscles in her face and her eye was twitching and her lips were quivering….this makes taking medicine hard. Then her legs and hands started to shake uncontrollably. She went to rest in her room before our guests were to arrive.
Just before people got her she took pain medicine and rubbed her body down with her pain lotion again. Throughout the party she smiled, visited and answered a million questions about how she was doing and feeling…each answer she was reassuring the person that she was ‘fine’ or ‘ok’. When she would feel her body failing her she would go to her room and rest, take more pain meds and regain her courage to go out with our guests. She came to me twice and when she looked at me I could tell in her eyes that she was barely hanging on.
She barely ate anything all day due to stomach pain and nausea.
When people were doing sparklers and wearing their flashing necklaces she sat in the house or away from everyone because she felt a seizure/episode coming on.
She took pain medicine again before we started dancing and singing in the evening. She danced one song and sang/performed one song with my dad.
When everyone left she looked at me through tears and said that every single part of her body was screamin in pain and her arms and legs felt like they weighed 1,000 lbs. She came in and took her medicine for the 8th time that day, rubbed down with her pain lotion and went to bed.
Since Saturday she has only left her bed to use the restroom, take medicine and nibble on food. She hasn’t eaten much and has slept nearly non stop.
So to have fun and be ‘normal’ for one day comes with a hefty price tag for Paige. To put on a happy face and reassure everyone that she is ‘ok’ means she will have hell to pay for 4-5 days.
Paige is 16, she doesn’t want to be sick, she wants to be normal, she doesn’t want people to see her tics, pain or struggles so she fights very hard to keep them hidden. But this doesn’t mean that she IS ‘ok’ or isn’t in pain.
Just keep in mind when you see Paige or someone else with a silent disease or illness, just because they ‘look good’ doesn’t mean that they feel good.