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Chronic IllnessThe Undefeated

4 Tips for Advocating to Employers Post-COVID

by Ariela Paulsen September 20, 2021September 20, 2021
written by Ariela Paulsen
Emily Co-founder Mighty Well advocating at work

The struggle to find work that accommodates chronic illness and disability is not new.  Many of us exist in a grey space — able to work, but not in the environments offered by our employers.  We face a choice to either give up our careers and income or push through unhealthy situations for as long as we can, suffering throughout and eventually crashing.  Maybe we’ve asked our employers to make a change and been denied.  Or perhaps we’ve avoided the conversation because we can’t handle another denial contributing to the trauma of living in an ableist society.  But without these accommodations — however minor — we simply cannot be our best selves, the best employees we can be.

These struggles are nothing new.  We are, however, facing a reckoning in the American workforce that has the potential to change things in our favor!  This is year two of workplaces being forced by a pandemic to radically change.  Millions of people now work virtually, often on their own schedules.  Millions more have chosen not to return to jobs that didn’t meet their needs.  Employers are now forced to acknowledge two facts:  they can make accommodations and still function, and, thanks to this “Great Resignation,” they no longer have the upper hand.

If you have been stuck in a work environment that didn’t work for your health but are waiting for the right moment to self-advocate, now is your moment!  It can feel scary and isolating to make a move, so we’ve put together some tips to boost your confidence:

Emily - I am not sick, i am the sickest-872345-edited-477620-edited.jpg

1. know yourself

First and foremost, you need to know what accommodations would be helpful before you can ask for them!  Each work day, think to yourself “what would make this better for me?”  What moments feel unhealthy? Where do you feel your energy or focus waning?  When do symptoms pop up and why?  Don’t forget to notice the positive, too — there may be ways this job is very supportive of your health without you even realizing it.  Be sure to take note of those moments as well.  Write down all of your findings and, after a week or two of gathering this information, try to envision your dream job situation.  Where would you work?  Who else would be there?  What hours would you work?  Would it involve the stability of the same routine every day or do you prefer variety?  Do you stand, or what surface would you sit on?  What do meals look like?  What does the physical environment include (or not)?

From this dream situation, write down a few ways in which this job is already supportive of your needs.  It can be small, like “I get to bring my own food.”  Then write down three changes that would make the most impact for you right away.  These can be a starting point for your conversation.

(You may want to take a look at ADA guidelines and choose starting changes that can clearly fall under the label “reasonable”)

Photo by Estée Janssens on Unsplash

2. start early

Don’t put this off too long.  You may be thinking that you’re ok right now and you don’t want to shake things up during the pandemic, or you’ll just wait and see if your health can hold out a bit longer.  Right now, employers are willing to bend to get good workers.  They have also fallen into a rhythm with the pandemic in which they are open to new ideas.  If you wait until the pandemic is improving and they are going back to old ways, not only may they be more rigid, but they may be overwhelmed by new changes and not interested in hearing anything extra.  In terms of your own health, you want to be confident when you ask.  Do it while you are still able to perform relatively well at your work and present well during these tough conversations.  On that note — if you can, put in a little extra focus at work in the coming weeks.  The higher quality your work is before you ask, the better position you will be in to argue that you are an asset worth keeping.

3. bring evidence

This is key.  Write down ways in which you benefit the workplace.  Bring positive reviews, projects you worked hard on, or ideas you had that led to successes.  Don’t be afraid to really talk yourself up!  Also bring evidence of other workplaces that have accommodated for employees and found success.  Find studies or examples to prove that positive work environments and happy employees benefit everyone.  Or, if you have examples, remind them of times you were able to get what you needed and how much it benefited your work.  Vague statements or requests will be much less effective than hard facts proving that what you want benefits everyone!

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4. don’t go it alone

Advocating at work can feel very isolating, as if it’s just you up against the machine of capitalism and all of the ablist systems (and people) involved.  You can combat these feelings by first remembering that everyone involved in this process is just human.  Assume best intentions and understand that they are doing their best, given the skills and understandings they were given.  Most importantly, though, to combat isolation it helps to find other people.  Talk things over with friends, family, or a coworker.  Practice what you’re going to say and maybe ask for feedback.  If you can find anyone in a similar position, that will help tremendously!  If you don’t have any friends who are sick or disabled, you can join a support group (like our Friends in the Fight) for like-minded support.  Better yet, if you can find someone else at work who feels they would benefit from the accommodation you are seeking, ask them to join you in your advocacy.  There is powerful strength in numbers when convincing employers that what you seek is good for the company overall.  At the very least, have a supportive friend in on what’s going on.  Go to them when you are nervous beforehand, and plan a time to chat with them afterwards to process whatever happens.

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one last thought

We know that, despite the best preparation and timing, sometimes employers simply won’t (or can’t) meet our needs.  If you find yourself in this situation, remember that you are not alone, and that it’s ok to prioritize your health.  If you are considering looking for a new job that is a better fit for your body, make sure to check out Chronically Capable — a job search engine created by our Lyme warrior Friend in the Fight Hannah Olson!  It matches sick and disabled workers with employers able to accommodate for chronic conditions.  

For more tips on having a meaningful career that works for you, check out our Careers and Chronic Illness guide here!

Be Your Own Advocate
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Ariela Paulsen

Ari struggled with a wide array of health problems for decades before being diagnosed with EDS/POTS/MCAS/etc at age 25. She began writing as a way to heal while spreading information and helping others through their own journeys. She loves being part of the Mighty Well team, sharing the stories and strengths of spoonies everywhere!

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