Coming Out — As Disabled

Published in

Ascent Publication

6 min readMar 13, 2019

In 2017, I was finally diagnosed with a rare disease that I had been battling for 9 years.

In 2008, I was working as an intern at a casting company in NYC. I was in my junior year of university, on my way to obtain a Bachelor of Fine Arts in Acting. However, on this Spring day, the whole room went black. I distinctly remember eating lunch at my desk, and suddenly, I could no longer see. I thought that was I going blind and was petrified. My co-workers immediately called 911, as they said my eyes were rolling to the back of my head and the left side of my face began to droop. Everyone thought I was having a stroke. My mother had a stroke in her 30s, and my father in his early 40s, so this was something that could have very well been a possibility — as I had all of the visible symptoms.

For over nine years, from early 2008 to late 2017, I had been back and forth in hospitals being tested for strokes and seizures. It got to the point where I just stopped going to the hospital because no one could figure out what was wrong. Until, December 2017, when I lost my motor skills. This was preceded by weeks of “episodes” and a dramatic reduction in stamina, where I could barely walk a few steps without feeling out of breath. I woke up one morning and could not walk, nor talk clearly. That was one of the scariest moments in my life, and I felt completely helpless. My husband brought me to the doctor immediately where I was able to get an emergency appointment, and she changed my life forever. The doctor I saw was scared that I was seconds away from having a stroke. She immediately sent me to a neurologist — which honestly, didn’t give me much hope. I had seen neurologists in the past — many said something was wrong, but they didn’t know what, and some doctors even accused me of “faking it” or “faking seizures”. However, this one changed my life forever with a new diagnosis that sounded crazy to me — but when I found out more about it, everything finally made sense. With this new diagnosis, I also would no longer be accused of “faking it”.

What is a Hemiplegic Migraine?

WebMD states, “Hemiplegic migraine is a rare and serious type of migraine headache. Many of its symptoms mimic those common to stroke; for example, muscle weakness can be so extreme that it causes a temporary paralysis on one side of your body, which doctors call hemiplegia.”

Prior to my diagnosis, I thought Migraines were just bad headaches that caused light sensitivity. I had no idea that they are actually neurological disorders and categorized as a nervous system disease. Also, I did not realize that there were rare forms of these neurological disorders that could cause stroke like symptoms — and even lead to comas. Although there are physical symptoms associated with a Hemiplegic Migraine episode, this is what you would call an “invisible illness”. It is not something that a stranger would automatically know that you have. Unlike having a broken arm in a sling, or a foot in a cast, this is not a physical illness that you will see at first glance.

When the specialist first told me that I had Hemiplegic Migraines, I thought it was a mistake because I didn’t have headaches. Then, I found out that you can have Migraines without headaches, and that they are not the same thing. The neurologist challenged me to keep a journal of all my symptoms and then make an appointment for a follow-up. Lo and behold, head pain happened to be one of my frequent symptoms. I know that I said I didn’t have headaches, but until I journaled, I didn’t realize it. The reason for this is that those of us that deal with pain regularly, many times become accustomed to it. The pain becomes a part of our daily lives, and we in many ways dismiss it. The journaling also helped me see how many symptoms I fight through daily with this disease. I read that only .03% of the population have Hemiplegic Migraines, and I confirmed that it is actually listed on National Institute of Health’s website as a rare disease. I don’t want to be sick or battle this illness, but there is a relief in being able to put a name to it and know what is wrong.

Below is a list of symptoms associated with Hemiplegic Migraines, from Web MD:

Sometimes, before the actual headache pain, you’ll get other symptoms that it’s coming. These early symptoms, called auras, can include short-term trouble with muscle control and sensation:
- Severe, throbbing pain, often on one side of your head
- A pins-and-needles feeling, often moving from your hand up your arm
- Numbness on one side of your body, which can include your arm, leg, and half of your face
- Weakness or paralysis on one side of your body
- Loss of balance and coordination
- Dizziness or vertigo
- Nausea and vomiting
You may also have problems with your senses, communication, and drowsiness:
- Seeing zigzag lines, double vision, or blind spots
- Extreme sensitivity to light, sound, and smell
- Language difficulties, such as mixing words or trouble remembering a word
- Slurred speech
- Confusion
- Loss of consciousness or coma (rare)

How My Life Has Changed

There is no cure for a Hemiplegic Migraine sufferer. Out of these 13 symptoms, I have experienced 12. I have had every symptom listed except for a coma. This disease has changed my life forever. I am still smart as a whip, but I’ve learned that I work best when in remote environments so that my work is not affected on days when I am not well enough to commute. Also, remaining in my own environment — for example, working from home — reduces my stress significantly and helps keep some of my symptoms at bay. It is hard because like most of my generation, I am saddled with a six-figure student loan debt. I feel like everyday I have to make a choice between working myself into an early grave so that I can pay my debt or putting my health first.

Living with an invisible illness is a daily battle. Some people will think you are “faking it” and others will think that your illness has disappeared because you have a good day. With an invisible illness, you have good days and bad days — many times you never know which one you’re going to get. My biggest fears have been about the effects it has on my career. Despite always juggling multiple projects and never missing a deadline, many companies still want to have that face-to-face time with butts in seats — even if the work can be done remotely. When you have an invisible illness and can’t make it into the office at times, your lack of presence becomes a problem for leadership even when your work does not suffer. This has been something that I’ve dealt with, and I know many of my fellow disabled individuals have dealt with. However, this year, I’ve become more accepting of my ‘new normal’.

It’s been 11 years now, since I first got sick; but I am only now becoming okay with it. Instead of being ashamed, I’ve actually become proud that I am able to accomplish things despite having a wall of challenges on a daily basis. I understand that if a choice has to be made between my health versus someone else’s expectations, my health has to come first. Being disabled doesn’t mean someone can’t do something, it just means that they may have to do it a bit differently.

For more information on Hemiplegic Migraines, please check out the resources below.

Jessica Israel, MBA is a photographer, actress, poet, and writer redefining what it is to be an artist. She is also a marketing communications and creative consultant who advocates for equality, diversity, inclusion, and positive work life balance.

Please visit http://jessicaisraelmba.weebly.com/ to view her portfolio and blog on artistry.

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Coming Out — As Disabled

What is a Hemiplegic Migraine?

How My Life Has Changed

Written by Jessica Israel