I Need A Workplace Accommodation, Now What?

I thought I needed to “try harder” to stay awake. I tried everything. More sleep, more caffeine, less caffeine, better time management, and I tried to be more disciplined. No matter how hard I tried, excessive daytime sleepiness did not take a break just because I was at work or school.

I was falling asleep at work, late everyday, and dangerously close to receiving a disciplinary action. When I was finally diagnosed with idiopathic hypersomnia (IH), it made sense why it was so hard for me to stay awake.

IH is a chronic neurological sleep disorder. There is no amount of discipline that can tame the symptoms. I needed help. I needed a reasonable accommodation.

As described in Title I of the Americans with Disabilities Act (ADA), a reasonable accommodation is any modification or adjustment to a job or the work environment that will enable an employee with a disability to perform the essential job functions.

Overcoming the fear of requesting accommodations for an invisible illness like IH

Honestly, I felt uncomfortable asking for an accommodation.

Because IH is an invisible disability, I was afraid that my boss would not believe me. I do not look like someone with a chronic medical condition (whatever that is supposed to look like).

No one would suspect that every second of the day I am fighting to stay awake – a constant struggle with sleep inertia, brain fog, and an insatiable need to sleep. Individuals with IH have legitimate concerns that we will be viewed as lazy or exaggerating our symptoms. That fear alone keeps many of us from asking for support that could genuinely help.

An accommodation is not special treatment. It is not a favor or an unfair advantage. An accommodation is a tool that helps create a more equitable playing field for all.

It is designed to ensure that individuals with disabilities have access to the same employment opportunities and benefits as those without disabilities. Simply put, accommodations are a legal right.

Below are a few suggestions to help individuals navigate the reasonable accommodation process at work and school.

Step 1: Know your legal rights with idiopathic hypersomnia under the ADA

There is power in knowing our rights as individuals with disabilities. Understanding those rights can help us advocate for ourselves, access the support we need, and navigate work and school with greater confidence.

Just the thought of learning about laws may be overwhelming, however you do not need a law degree to gain a basic understanding of the ADA and the protections it provides. Here are my favorite websites to learn more about disability rights, including reasonable accommodation:

• Job Accommodation Network
• Project Sleep Accommodations Toolkit
• The National Network
• The Equal Employment Opportunity Commission

Step 2: Approach the IH accommodation process collaboratively

Be reasonable. While it is true that employers and schools are legally required to provide reasonable accommodations, that statement without context can miss the collaborative nature of the accommodation process.

An accommodation request should not become a demand that leaves no room for discussion or compromise.

Approaching the conversation willing to communicate and work collaboratively will set the tone for you and your employer to find a solution that works for both you and the organization. Know which accommodations are effective for your symptoms while also staying open to other solutions.

The goal is access, not preference. Your employer does not have to provide the exact accommodation that you request. They are required to provide an accommodation that is reasonable and effective to perform the essential duties of your job.

Step 3: Align your idiopathic hypersomnia needs with company policy

Know your company reasonable accommodation policy. While it is true that there are “no magic words” when making the request, I find that using the policy as a guide helps to keep your request clear, focused and complete.

Following the established process and using forms provided by the organization may also help ensure that you submit the appropriate supporting documentation the first time, potentially avoiding unnecessary delays.

Usually, a provider only needs to confirm that you have a medical condition that impacts daily functioning and requires an accommodation to perform the essential functions of the job. Explaining your entire medical history is probably not relevant. But you want to share enough so that the focus is on symptoms and how they impact your ability to perform at work or school.

Review your position description carefully. Know which of your duties are considered essential functions. Understand that according to ADA an individual must be able to perform the essential functions of the job with or without an accommodation.

Step 4: Clearly communicate your specific IH symptoms and work challenges

Clearly communicate your needs. I find that specific requests can be easier for employers and schools to understand.

Instead of saying, “I have IH. I am sleepy all of the time and need accommodation.”

Instead try, “I experience significant sleep inertia in the mornings. For the first few hours after I wake, I am disorientated and cognitively impaired. A flexible start time would allow the inertia to wear off so I can be alert when I begin my work day.”

Needing accommodations does not mean you are incapable, unmotivated, or asking for too much. You deserve an equal opportunity to employment and education, and an accommodation can help you achieve that.

It is equally important to know what options are available if an accommodation request is denied.