(This post continues on from Falling Down on the Job: Chronic Illness in Post-Graduate Workplace Part 1).
What could anyone in my situation do to prevent what happened to me? I have some thoughts on this…
1. Do not be in denial about how badly you are doing.
For the longest time, I not only avoided disclosing my condition to my employers – I also tried to work around it and ignore it as much as possible. I soldiered on, and denied to myself that I really was deteriorating on the job. I should have put some time aside to figure out if it would be best to take a medical leave of absence or even quit – and just do it. This would have been a better choice than to hang on for months hoping my symptoms and performance would improve, only to decline and set the project back – as well as delay in getting someone else hired who was well enough to do my job.
2. Accommodate yourself first.
Make a list of symptoms and limitations which affect specific aspects of your job and the core requirements needed to do it properly. Make a separate column on the page with a suggested accommodation for each limitation that you think will make your job easier to do, and if possible accommodate yourself first before asking for outside help.
If you need more back support, ask if you can order a chair with more back support or bring your own chair in. If you need to work lying down part of the time, see if there’s a way to lie on the floor with a laptop and prop yourself up against a wall for support. If anyone asks why you’re doing it, tell them it increases your productivity and leave it at that, as that’s the most important thing to know. Better to look a little strange and get things done than be more fatigued, in pain, and not get things done. Maybe you’ll be perceived as eccentric – but that’s better than being perceived as not being productive.
3. Quantify yourself: Track your symptoms and how being ill has an impact on your time and productivity.
Keep a diary of your symptoms and limitations, focusing on any symptoms which interfere with your sleep cycle, mobility, speed at which you complete tasks, the ability to remain in one position over time (e.g. standing or sitting unsupported or supported), your endurance for focusing at meetings and so on. Create a “danger zone” where you find your symptoms and limitations beginning to interfere with your ability to work even with accommodations. Then do an honest inventory to decide whether or not you can cut back hours, leave the job for another one, or stop working entirely and apply for disability.
4. BEFORE your own accommodations fail, find people outside the company to talk with about the situation.
I not only cut off most of my social life in order to maintain my job, I also cut myself off from talking to anyone else about what was going on. I thought I could deal with the situation on my own. Had I gone to an independent living centre for the disabled, talked to a counsellor who specialized in chronic illness and disability on the job, or found a support group dealing with chronic illness in the workplace, maybe I would have gotten insight into how to get the accommodations I needed to do my job without full disclosure – as well as advice on when to call it quits.
I would have done this at the time if I had not felt such actions were one more distraction from getting my tasks completed. I also had too much pride. But now I realize just how valuable insights and advice about my situation would have been, and they might have prevented me from losing my job.
5. Get a medical assessment that outlines what your limitations are and make pragmatic decisions about work based on it.
If you aren’t disabled enough and still can work, determine what your capacity is for work. If one major aspect of your condition is chronic fatigue, determine how fatigued you really are and what you need to do to pace yourself. Some research clinics can test your fitness relative to fatigue using two day VO2 max tests and cardiac output devices. With the results of these tests, suggestions on how to pace yourself can be provided. If one major aspect of your condition is lack of mobility due to pain, see a pain specialist and physical therapist both to assess limitations due to pain and find a way to improve your mobility and pain and avoid triggers that make them worse. Objective measurements of your limitations by someone else can help you decide when (and how) to work and when to rest.
6. Disclose within your company or workplace if there is clear evidence the disclosure will lead to more support and not stigma. Do not disclose in haste. Wait and watch.
Observe whether other people on your team and in other departments are open about having a chronic illness or disability, and how the workplace accommodates them. Pay attention to your manager and teammates to see what kind of comments and discussions they have when it comes to other employees who are currently out sick or on leave. If you are out of work for a day or two, make a note of how your manager and teammates react in response to your absence and what their expectations are around work when you are at home (or in the hospital, for that matter). Determine based on observations, and on your position, if disclosing your condition is the right thing to do. Be prepared to inform others how your condition might affect your work while providing answers as to how you can reduce and avoid any negative impact on others. Ask for specific assistance or accommodation only if you can’t supply it yourself and your employer and/or teammates are in a position to provide it. The goal here is to reduce your footprint of need and appearance of being a burden as much as possible – even if people say they are supportive or act sympathetic.
7. Seek out employment that provides some flexibility and accommodation in general.
As much as possible, find out about a company’s culture regarding benefits prior to applying. Network with people who already work there, and ask about the work-life balance. Find out how flexible the hours are, what the telecommuting policy is, how much paid leave is given, what other perks and services may be available which could support you in managing your chronic condition.
When interviewing for a job, part of your task is to interview the company to see if it’s a fit for you as much as it is the company’s task to see if you are a fit for them. When it’s clear the company is thinking of making an offer, consider how much leeway you have to negotiate for accommodations which healthy people might also request for reasons other than managing an illness – such as more time off, more telecommuting, or a later start time. Decide if you are willing to take a hit to your pay if comp time is mentioned, as it might come up in response to your request.
8. Create your own employment if working outside the home full time won’t work for you.
When none of the jobs seem to fit based on your limitations but you are certain you can do something productive on a consistent basis, consider creating your own job or business. Talk about your ideas with a career counsellor. Consult disabled people who have started their own business and learn what the advantages and pitfalls are. Talk to freelancers.
9. Accept that you’re too sick to work if it really comes down to that.
Sometimes living with a chronic illness is so disruptive to working that even if you have good days – good moments where you can be productive – you can’t consistently and reliably meet deadlines. This is what happened to me over time, and rather than push myself to get into work everyday, it may have been better to admit defeat – at least temporarily – and make my health my first priority. There will always be other opportunities even if you are upset about missing out on this one, but you won’t be able to take them on later if you don’t take a break to heal.
These are the steps I’ve thought of about in confronting the issue of chronic illness and how it could affect my ability to work. But this is only my side of the story. The greater culture in which we live and our workplaces will have to face the issue of chronically ill and disabled employees as time goes on because a growing number of people have chronic conditions and disabilities. One can only hope that our rising numbers might lead to greater cultural shifts to accommodate and integrate the needs of us and others.
Article kindly submitted by Camp Other (@CampOther). Visit Camp Other’s blog on Lyme Disease, Science and Society.
Got a story about navigating academia (or related fields) with a disability or chronic illness? We’d love to hear it. Email us at email@example.com.