When My Long-Term Disability Was Revoked Because I 'Don't Look Sick'

I have 15 — no, wait, 16 — invisible illnesses. It’s hard to keep count sometimes. Are you ready?

Celiac sprue disease • Ehlers-Danlos syndrome type III hypermobility (EDS) • endometriosis • eosinophilic esophagitis (EoE) • fibromyalgia • gastroparesis • hypophosphatasia (HPP) • interstitial cystitis (IC) • irritable bowel syndrome (IBS w/constipation) • mast cell activation syndrome (MCAS) • osteopenia • ovarian cysts, chronic • postural orthostatic tachycardia syndrome (POTS) • Sjogren’s syndrome • small fiber neuropathy • thyroid disorder (hyper and hypo)

Those are just my main conditions. I don’t mention the chronic migraines, the painful menstrual cycle, the times where the chronic fatigue is so bad all I can do is lie there with my eyes closed because my eyes won’t even track.

Yet recently, I had to defend my disability so I could actually afford to eat.

I look fine from afar. As you get closer, you can see my puffy eyes that swell shut in the mornings, and the thinning hair, the chemotherapy bloat. The constipation that builds up the toxins in my body. My MCAS causes ugly black eyes, and my skin no longer has a healthy glow.

Or maybe you don’t see those things, because unless I point them out, people don’t take it in. Invisible illness is a barrier to actual acceptance as a disabled person, and it leads to doubt in my own mind.

I’m not in a wheelchair. I use a cane sometimes. I don’t “look disabled,” so am I disabled? Truly?

I know the answer is yes when simply standing up is a gamble. My joints scream at me, I may faint, and my body feels like it is full of sand. I am not just standing; I am winning that day. It is an accomplishment, not an action.

Still, who am I? I ask myself that question all the time.

I struggled for years to define myself not as a Disabled Woman. I am a Woman with Disabilities. Disabilities are what I am, not who I am. My body’s state, shape, and condition don’t tell you that I am a loyal friend, kind, and silly. I love to write, to read, to paint, to create. I love my boyfriend and my family. I am so lucky, because they are so very supportive — in the best way they know how.

Am I truly disabled if, on my “good” days, I can run three errands before I have to lie down from pain and fatigue? When I go out of town with my significant other on the rare occasion that my good days match up with my plans, I have to pack a tote bag full of meds and we need to know where the nearest hospital is. Still, sometimes I can do fun things. Does that exclude me from being disabled?

I received a very small stipend in long-term disability, because I bought and paid for that insurance at my last job before I had to retire because of illness. Recently, my long-term disability company saw that my primary doctor noted I was sexually active in my chart. They said if I could have sex, I could work.

Really.

Then they followed me and surveilled me for two months, taking one single actual video of me — gasp — going to a coffee shop for two hours. For that, they revoked my long-term disability.

Yeah, for real. This truly happened. Sixteen conditions, and they apparently sat outside my home for days, waiting for me to appear. I was inside having attacks, lying on the bathroom floor by the toilet for a full day on more than one occasion, but they couldn’t surveil that. Or the mast cell activation degranulation events that leave me completely debilitated, in bed, my thermoregulation off, so I am shaking and shivering from heat.

Had I been a man, would my sexual activity have dictated my ability to hold a job? For the record, I wasn’t a sex worker. I was a manager at a financial institution. If my boyfriend had come with me to that interview and talked about my sexual prowess, would I have been paid more?

The disability company even met with me, after I had to reschedule three times because I was too sick. I sat with them at the same coffee shop they would later surveil me at, as the representative asked me offensive questions, while my answers grew ripe with frustration.

“Why don’t you look sick?” he asked.

“A lot of illness is invisible.”

“Why are you rocking back and forth slightly and rubbing your thighs?”

“Because I am in incredible pain, and I can’t sit still when that is the case,” I said, grimacing. It really was bad that day, but I still made it out. Win.

“Who actually told you that you were disabled? A doctor? Or did you just decide this?” he actually asked. My jaw dropped. What hypocrisy!

A man I’d never met before that day, who was not at all in the medical field, accused me of making it up. I went through enough of that doubt before I was diagnosed at age 34, well after I’d been sick for years.

“Every doctor I have ever been to has said I was definitively, permanently disabled. Social Security Disability found me disabled. I don’t even know why you’re questioning it when my doctors provided you with a total sum of over 5000 of medical records?” I spat, trying to keep my cool. If I lost it, I would lose my stipend, I thought.

“So you’re telling me that you consider yourself disabled?” he scoffed.

I closed my eyes, and thought about how hard I had fought with myself to be a Woman with Disabilities. Not a Disabled Woman. I nearly choked on my answer as I felt myself compromising who I inherently was.

“Yeah. I’m a Disabled Woman. I have 16 conditions. This is the money I literally, actually buy food with. Why are you harassing me?” I finally said. Before he could reply, I finished my thought. “You drove from New Mexico to Arizona to meet with me. You got a hotel, I’m sure. Maybe a rental car. Definitely your wages. Do you see that your company just spent five times what I get a month trying to see my invisible disabilities?”

“Speaking of, I need to get a picture of you with your cane,” he said, completely ignoring me.

“Are you a doctor?” I asked.

“What?” he looked at me, clearly afraid to answer as he saw where I was going.

“My doctors consider me disabled. End of story. You are not a doctor, yet you say you haven’t made a determination. You’re soulless. Take your picture, then this interview is done.”

That’s what I should have said, if I’d had the nerve. Inside, I was doubting myself, doubting the very pain that was taking the breath from me. Instead, I muttered, “Nevermind.”

I posed for his ludicrous picture, my body on display to be scrutinized.

When I was finally denied a month later, I reminded the “analyst” that my illnesses were invisible, and the tens of thousands of dollars they actually spent surveilling, spying, interviewing, and collecting information about me was a pointless act. A moot point, because I look fine on the outside. I got hung up on by the analyst who denied me.

Oh yes, I got a lawyer. They are an amazing firm led by a strong woman. They fought hard, and their appeal on my behalf pretty much closed down every ridiculous argument they made.

I’m still waiting to find out if I have it returned to me, though now my lawyer will get a chunk of that stipend for the next several years. This is the price I pay to defend the fact that I am a Disabled Woman. The very thing I didn’t want to be.

The internal price is much, much steeper. I compromised who I was in that interview. I should have told them to get lost and talk to my doctors. Which they never did, by the way.

Who am I? I think I figured it out. I am a Woman with Disabilities who has to fight every day to convince the world that I am legitimately suffering. I will continue to do that, despite the way it chips away at my mental energy. I am a Woman who loves, is loved, and supported because I am kind and loyal, not because I have 16 conditions.

I am a Strong Woman. Hear me roar. I do it often.