A Pocket Guide for Requesting Accommodations at Work

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“But you don’t LOOK sick!”

This is how most people respond when I tell them I have a chronic illness that is disabling. They’re right: My illness is usually invisible. I have no wheelchair, no visible medical equipment, no physical markers. It makes it difficult for people to believe that I am sick and need accommodations. (You can read more about that here.)

I may look typical, but on the inside a battle rages against my immune system. I’ve spent the last 15 years navigating the work environment with an invisible illness. I experience extreme fatigue, pain, brain fog, overstimulation issues, heart palpitations, and air hunger — but the symptoms change in severity nearly every day.

My symptoms come and go. Sometimes they are so severe that I can’t leave the house, other times I am able to work a full day at the office and go out dancing at night. It is unpredictable.

It makes work… challenging. It’s made working full time without accommodations impossible.

But, asking for accommodations is hard. My bosses are frequently confused by my inconsistency because there is no widespread national narrative around chronic illnesses. It took me a long time to start asking- because I was scared, because I knew I would need to do a lot of explaining, because, quite frankly, wasn’t even sure what to ask for!

Through trial and error, I have learned what accommodations I need and how to ask for them and I got what I needed without going to court.

10 Ways to Ask for an Accommodation at Work

Asking for help can be hard. You may be nervous — and that’s for good reason. We still live in an incredibly ableist society and there are risks to asking for an accommodation, particularly if you are also apart of another group that is frequently discriminated against.*

But remember: by asking you are not only helping yourself but everyone who is immunodiverse. We are 20% of the population, the louder we get, the more companies will have to respond.

My hope is that this list helps you feel empowered and prepared — and I hope it sets up Human Resources (HR) to respond well to your requests.

1. Study the culture and people. If you can wait to ask for accommodations, take time to figure out who coordinates accommodation and what they are like as a person. Make a list of what accommodations are obvious (special keyboards, screens, mouses, chairs, desks, food, etc). Check to see if your company has a policy about accommodations online or in the employee handbook. If there are policies, read them and figure out how to use their company language to your advantage.
2. Write out what you need and why. Prepare by writing down exactly what you need and determining what details you are going to share about your specific condition, illness, or disability. (Remember: you don’t owe anyone an explanation for why you need the accommodation.) If you aren’t sure what you need, check out askjan.org to get ideas. Prepare for this to be an ongoing conversation. The more specific you are about what you need, the more space you create for a healthy dialogue about what kinds of accommodations will work for both you and your employer.
3. Be emotionally ready. Most people have good intentions, but frequently make careless or hurtful remarks. It may help to write out healthy responses to common misunderstandings, repeat a mantra that helps you be gracious toward people’s ignorance, and also note why you are worth the extra effort. Go in confident that you are worth accommodating — because you are.
4. Schedule adequate time for the meeting. The meeting may take longer than you expect. I usually request an hour. I’ve had meetings be as quick as 10 minutes and as long as 2 hours. It depends on the readiness of the other person. It is good not to rush the conversation. If you find you don’t have time in the first meeting to come up with adequate accommodations together, don’t be afraid to give them time to do their own research and reflection before you make a commitment.
5. Schedule the meeting towards the end of the day. These meetings often trigger some tough feelings for me (feelings of inadequacy or worry about my value) — I like to do them at the end of the day so I can go home afterwards and do some good self-care.
6. Schedule enough time to recover afterwards. Whenever you schedule the meeting, I don’t recommend scheduling another interpersonal meeting directly after, just in case things don’t go as planned and you need space to process and reset.
7. Take notes during the conversation: It will help you remember what was said (this is especially true if you are emotionally triggered and cannot fully digest what is being said in real-time). It will also signal to Human Resources that you take this seriously, you will be holding them accountable, and you expect them to take you seriously, too.
8. Write a follow-up email. Summarize what you discussed with an explanation of the “why” (as vague as “medical condition” as specific as “I cannot travel to humid climates because of my arthritis”). Then, create a bullet pointed list of all agreed-upon accommodations and who is doing what. If it’s going to take a while to get your accommodations in place (for example, to create an indoor location for your service dog to relieve themselves), then make sure you have a timeline in place and a commitment for who will be responsible for which project. This ensures everyone is on the same page with what is happening, who is doing it, and when it will be done. It also gives you something to reference afterwards (this is especially useful if things don’t go according to plan). If HR does this for you before you have a chance, do not be afraid to respond with any requests for clarification. If something is going to take too long to implement, you can request interim accommodations. Make sure you feel confident about the plan.
9. Schedule a follow-up meeting. If your accommodation is not a one-time accommodation (like a special keyboard or desk setup), then schedule quarterly or monthly check-ins to ensure the accommodations are working. Adjust accordingly. I usually schedule regular monthly check-ins going out an entire year. I can always cancel the meeting if I don’t need it. This way, I do not have to do the emotional work of asking for a new meeting when something is not working well. It helps us address issues before they become problems.
10. Keep trust by being honest and proactive. I have discovered that companies are often skeptical of requests. They believe that employees are abusing or cheating the system by asking for accommodations they don’t need. You can build trust by communicating honestly and straightforwardly about your needs. If things change, let HR know sooner rather than later.

Accommodations that Worked for Me

I now have a toolbox of personal care items I provide myself and accommodations I ask for from employers. I encourage you to create your own toolbox that work for you!

Rest flexibility. On the top of the accommodations list is rest. My brain often needs a rest after a surge of work or a challenging meeting.

• Access to a pumping, nap, or meditation room
• Schedule that builds in midday brain breaks or rest hours.
• Work-from-home options for extended time (2 weeks or a month at a time during intense medication treatments)
• Flexible work schedule so I can attend medical appointments
• Flexible deadlines when possible
• Working 75% of the time for 75% of the pay (or whatever variation on this you need)
• Working from home every Wednesday (mid-week rest days were really important for me)
• The ability to call a taxi if I stay late for work reasons

Protection from overstimulation. Overstimulation, common in well-lit, noisy, or open floor plan workspaces, can cause or exacerbate brain inflammation and lead to “brain fog” or confusion. These tools help to mitigate that.

• Screen protector to reduce the glare of the computer
• A fake palm tree that was next to my desk and blocked the harsh fluorescent bulbs
• Wearing a hat at work
• Speciality glasses to reduce screen eye strain
• Custom earplugs to dampen the noise of the open floor plan
• Noise-canceling headphones
• Ability to book and work from a conference room all day
• Ability to work from home

Food. If you are lucky enough to work somewhere that offers employee meals as a perk, you don’t have to opt out and just bring your food from home!

• Custom individual meals made on the Auto-Immune Paleo (AIP) diet
• Reimbursement for snacks that follow the Auto-Immune Paleo (AIP) diet

Taking medications. Like many people, I require medications during the day. Some of these need special care, such as refrigeration or safe disposal of sharp applicators.

• Labelled shelf in the refrigerator for my medications that needed to be refrigerated
• Sharps container in the bathroom
• Water cooler near my desk (during protocols when I had to take medications 30 minutes before eating and 30minutes after eating, this was essential because the bathroom was two floors down)

These are just a few examples of the many accommodations that could be possible at your workplace. Your specific needs are likely different than mine. For example, many people who have digestive issues, like Crohn’s or Colitis, must be close to a private restroom. I encourage you to create your own list of categories of need and possible tools, and to add to them in collaboration with your employers — and share in the comments!

* For example, being a woman, just starting your career, at the end of your career, being a person of color, speaking with an accent, being a parent, etc.

133 million people have an invisible chronic conditions in the United States. Our illnesses may be invisible, but the more visibility we bring to the ways we can work with our conditions, the easier it will be for employers and employees alike to support our needs. You can check out the article I wrote for National Disability Employment Month for tips for employers.

READ NEXT: Introducing Immunodiversity.

Liz Travis Allen is a lawyer, public policy strategist, and speaker who applies her unusual combination of experience in service of a more equitable future. She is available to speak at your workplace about diversity and inclusion, invisible disabilities and women’s empowerment. To invite Liz to speak at your workplace about diversity and inclusion for the immunodiverse, contact her on her website, on LinkedIn and through the Invisible Stories Project.