The Stigma of Being Disabled Due to Invisible Illnesses

By Allison Jonergin

Multiple invisible illnesses have combined to disable me. In the order in which I was diagnosed, I have:

Asthma*: a lung disease causing shortness of breath, wheezing, tightening of the chest, and coughing

Endometriosis*: a disease of the reproductive system in which tissues making up the endometrium are found outside of the uterus on other organs, causing pain, infertility, abnormally heavy or painful periods, and digestive distress

Irritable Bowel Syndrome (IBS)*: a colon disorder characterized by abdominal pain, constipation, diarrhea, and food intolerances

Gastroesophageal reflux disease (GERD): a recurring malfunctioning of the lower esophageal sphincter, causing heartburn and the backward flow of the stomach’s contents into the esophagus

Temporomandibular Joint Dysfunction (TMJ)*: a disorder wherein the temporomandibular joint doesn’t move properly, causing pain and jaw locking

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)*: a disease characterized by debilitating fatigue not relieved by rest; other symptoms include sleep disruptions, cognition problems, pain, and the worsening of symptoms following mental/physical activity

Chronic Migraines*: severe headaches on more than 15 days each month, often accompanied by nausea and sensitivity to light and sound

Fibromyalgia*: a disorder featuring muscle tenderness and pain, malaise, fatigue, mood changes, and digestive and cognitive symptoms

Generalized Anxiety Disorder*: an anxiety disorder characterized by excessive worrying or fear, fast heartbeat, tiredness, irritability and problems with sleep

Hypothyroidism: a condition in which the body doesn’t produce enough thyroid hormone, causing fatigue, muscle weakness, and cold intolerance

Degenerative Disc Disease*: pain and muscle spasms caused by osteoarthritis of the spineDepression*: a mood disorder presenting with chronic sadness, suicidal ideation, fatigue, and changes in sleeping and eating habits

Guest blogging with picture of a white, 3-dimensional sitck figure writing with a giant pen

You can see none of these. I’m not bound to a wheelchair or using the assistance of a guide dog. I don’t wheel an oxygen tank behind me.

There are no cures for any of these illnesses.

Still, some ask, “Surely you don’t consider yourself disabled?”

I didn’t wake up one day and decide to identify as a disabled person. I spent a long time in denial before I accepted the truth.

Others ask, “You’re not just going to sit around collecting disability, right?”

In our capitalist society, it’s taboo to stay at home, unemployed.

“What do you even do all day?” the less blunt inquire.

I’m not able to enjoy what others perceive to be one long vacation.

I don’t question how productive you are on your days off. I hope you’re able to spend time doing things that give you life and lighten the weight of your worries.

It is hard work, physically, mentally and emotionally to live a disabled life due to invisible illnesses. I spend most of my day babysitting my illnesses, like a pack of children after a birthday party. One is getting sick in the bathroom. One has been up all night. Another won’t stop crying, giving me a headache. Yet another whines of fatigue, wanting to sleep in all day. One can’t eat this food or that. The one next to him says she’ll flip out if I don’t serve her this food and that other one too. Another is pinching me all over.

There’s no coffee, no time-out, no day off. There’s no killing any of the kids. I must care for each of them tenderly, loving them back to their sweet selves, if only for a moment. I’m exhausted before the day is half over, feeling overcome by what feels like the flu.

A bad morning doesn’t have to ruin my day, though. Once I give myself permission to start over with different expectations, the day is mine again to conquer. 

*May cause additional symptoms.

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She has fibromyalgia, CFS/ME and endometriosis. She also deals with irritable bowel syndrome, anxiety, depression and migraines.

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