I’m not going to lie.

The moment I landed my second rare disease diagnosis, I basically threw my hands up in the air and said, “Alright—I’m screwed.” Career-wise, there was no way I was coming back from this.

I mean who hires a girl who spends 75 percent of her time as an inpatient? You can’t exactly fashion a tie on your hospital gown and sneak out of the telemetry ward and into a board meeting. You have one life now— one job— and it doesn’t come with a paycheck.

So I did what I thought I had to do: I got a lawyer, started on the mountain of disability paperwork and gave myself over to the idea that I was now going to become a drain on the working population, my fiancé and my family— at twenty years old.

What a nightmare!

What came next was not abnormal.

Ask anyone who has ever been bound by the red tape of the disability process. Everything about applying for disability in the United States is a train wreck. Just forget it. If you thought giving up was applying for disability, you were wrong. It’s the most strenuous, obscene, confusing, frustrating and impossible process imaginable. So what else could I do? I threw my hands up in the air and said, “forget this.”

No way was I going to spend what little energy I had left in my body writing out forms and trying to translate legal jargon.

So I started researching what kind of jobs people with disabilities could actually do from home, in a limited amount of time, with a limited amount of energy and resources.

Let me preface this by saying, this article won’t help everyone. There is a stage in every illness where you’re not quite ready to quit just yet. Maybe your treatment is starting to work, but you’re just not to the point where you can return to your 9-5 job. Maybe your child is able to go to school some days, but you still have to pick him up too often or he has too many hospital stays for you to be depended on by co-workers. Not everyone can work during a period of illness and that’s okay. That’s what disability is there for, but for those who can’t work their way through the legal process or perhaps feel like they may still be able to work— just not full-time, I’d like to offer you some potential options for income.

Global Genes will be starting a new blog series to introduce you to profiles of different patients who have been able to find a niche career they can manage, while also managing their disease.

Interested in sharing your work-from-home story? Use our Guest Blogger form to share your story!

4 thoughts on “Chronically Employed: How Rare Works–What’s Your Story?”

  1. heather says:

    How timely for me! I too have 2 rare diseases and NO job. I’m at my wits end of trying to find employment….!

  2. Justin van kampen says:

    Must be a big problem dealing with rare disease and the work place, especially at a young age enjoyed the blog
    Regards Justin

  3. It gets better, I promise. I have so many great new posts for this series and I can’t wait to share them all. I know it’s going to give you guys the info and boost you need to get back out there! Tune back in on Monday for our first interview!

  4. Ilana,

    Thank you for starting this to be a ray of hope for so many left scared and wondering what to do when a disease hits them. You are right; it does get better.

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