It’s Invisible Illness Week. I feel like I often have to remind people that not every disability or illness is a visible one . The topic usually comes up for me when others are ranting about lazy people who don’t work and mooch off the government. Everyone seems to have a neighbor or acquaintance who doesn’t work because “she claims she is disabled but she looks just fine!” ( said with an eye roll and a judgy snort).
Only 4% of people with a chronic illness have an illness you can actually SEE. Disabilities don’t always require a wheelchair or a cane.
If somebody doesn’t want to discuss the nature of their disability with people they are not close to, they don’t have to. It’s sometimes hard to talk about it with people they do know and trust. They certainly don’t need to answer questions just to appease someone who needs to just mind their own business.
I believe I mentioned these types of raised bed here. These designs help make gardening accessible for wheelchair-bound disabled people. This seems like it would be a great project for scouting groups or tech programs in schools to do
Today a reader shares their personal story of being judged for using food stamps while buying food for their severely ill child. Much gratitude to this contributor for sharing their perspective and putting this out there.
Its hard being poor in America. When your kid is sick enough that you can’t work but disability doesn’t pay the bills, it is crushing.Robbing from Peter to pay Paul is difficult but begging for extensions and requesting medical extensions is harder and more dehumanizing.
For me, life of late consists of medications, PICC line care and antibiotic delivery. It is doctors visits and home nurses and other care for her. We also have two other kids that also have special needs and doctors visits, home therapists etc.
When any kid is hospitalized, it sucks. When you are her only means of communication and can’t leave the hospital but “live too close” for the hospital to help, the only choice you have is to not eat. Last month, I did that for 11 days. Almost half of last month, I had one meal or less each day.
This month, my kid is neutropenic. This means she has very low white blood counts and can’t fight off illness. She has to wear masks and eat special food. She can’t have anything that is not prepackaged in an individual serving. She can’t have anything raw or undercooked including fruits and vegetables.
With those restrictions, I went to the store. I picked up a handful of items including peanut butter, fruit, vegetables, smoothies, applesauce, cookies and cereal. She lost 12 pounds last month. We need to get these higher calorie foods in her.
I already hate using food stamps. We even separated items into food and nonfood and paid for the nonfood separately, taking it to the car so that no one would notice that we bought dog food and socks and other “niceties.”
The lady behind me saw my wife hand me our direction card before she went to bring the van around. At first, I wasn’t sure I heard her comment.
“Glad I work so you can buy junk food” was quickly
followed with “greedy food stamp recipients buying individual peanut butters while I can only afford a jar.” The last one was accompanied by a jar of generic peanut butter being thrust in my face.
I tried to explain and she didn’t believe me. I tried to ignore her but things kept getting more heated. I put myself between her and my daughter and kept my head down. As I left, she was still yelling at me to spend her money more wisely.
All of my trip cost 38.41. I will skip meals to make that work. I will hope that my wife and kids don’t notice. I will claim I am not feeling well. My kids have to eat.
This is what they can’t see. Medications, IV antibiotics, PICC line supplies, respritory equipment, hand sanitizer hospital bracelets, sharps container, stethascope, PICC lines and masks.