For many of us who become disabled, the recognition and acceptance process isn’t easy, and all too often, employment and disability are inextricably linked.
For many of us, part of becoming disabled is losing our employment.
The grief and loss of becoming disabled is often entangled deeply with the loss of income, and often the loss of the sense of purpose or fulfillment that many jobs provide.
This post focuses on disentangling these pieces and allowing yourself to process these losses separately so you can consider them when you reach a point of determining if and how you might start working again.
Let’s define work
Our society deeply values work and often has a very narrow definition of it. I want to help you break from that stereotypical view.
All too often, our worth as human beings is defined by the work we do. This is especially obvious here in the US, where a very typical conversation starter is the question “so what do you do for a living?”
This question and value is the result of our living in a capitalist society, and honestly underpins many of the biases in our society – including sexism(childcare, eldercare, household maintenance and other traditionally female responsibilities are devalued as “not real work” or generally are poorly paid) and racism(work taken on predominantly by black people post-slavery has often been described as “unskilled labor” or otherwise devalued).
Historically, visibly disabled people have tended to be infantilized when it comes to work(being viewed as their family’s responsibility, if they weren’t simply institutionalized), and invisibly disabled people have had to either pass as abled or experience similar treatment.
I would argue that the act of surviving in today’s ableist society IS work. Getting SSI or SSDI coverage is work. Navigating the social welfare system is work. Navigating the healthcare system is work. Creating a plan for managing our conditions is work, and figuring out how to navigate all the spaces not designed to be accessible for our bodies and minds is also work.
Deeply understanding your condition and treatment options is the best way for you to develop a quality treatment plan with your doctor. This gives you the best chance of the fullest possible recovery and the best possible management of your condition. This is the most important work you can do for your quality of life.
Quality of life is simply priceless, and no matter what insurance you have, it’s much better(and cheaper) to prevent or minimize damage, rather than pay for damage reduction after the fact.
Processing your emotions about work
It isn’t easy to adjust to being disabled. It’s a process that takes time and mental energy. Very often, becoming disabled also disrupts all other aspects of your life including both work and all of your relationships.
Befriending your condition is an essential part of your mental and emotional healing process, and it’s also incredibly helpful in terms of enacting your treatment plan.
Losing your job or career can also be a weighty loss, and as you adjust to your condition, and find yourself able to do more, the grief around losing your employment is likely to come to the forefront.
Allow yourself to grieve that loss too. It’s also a very real and valid loss. This is especially true if your disability prevents you from returning to the work you have loved.
Now that you have the financial stability(such as it is) that disability benefits give you, it makes sense to consider your future employment options.
Think about what you valued about your work, and what were the most important features that you would like to see reflected in the new field you might pursue.
In my case, I lost the career path I’d planned for myself just two years after graduating from college. I had studied biology and chemistry, with the intention of working in fishery science.
My movement symptoms made it unsafe to consider returning to laboratory or fieldwork, so I needed to completely reassess my goals.
I recognized that I liked the culture of conservation and research. I wanted to be part of understanding the natural world around me and working to protect our environment.
I had some experience with Geographic Information Systems(GIS) during one of my internships and eventually recognized that shifting my career focus in that direction would allow me to continue to work in those areas.
While doing fieldwork, I was directly interacting with wild animals. Since I couldn’t do it anymore, the next best thing was to work with data about these animals and the environment they lived in.
I created maps for county park systems, and conservation groups, and loved it. I was still working in similar spaces, with similar goals, even if the work I was doing was different.
Take the time to refocus yourself, grieve your loss, and then adjust to your new plan. Think about the steps you’ll need to get there.
With disabilities, we generally have fewer usable hours in our days, and many things take more energy than they used to. Your energy is a precious resource now, and one that you need to conserve.
Prepare for the adjustment process
Starting a new job is always a mental adjustment, as you get used to the new work culture, the new patterns and habits, and the new people you are working with. Expect it to be exhausting for the first few weeks or months as you adjust.
Maintain your self-care work throughout so you have the best possible chance of maintaining your job and minimizing your flares.
Make sure that whatever job you apply for, you can maintain all of your self-care activities while doing it. If you feel done after managing your treatment plan, you likely are not ready to work yet.
After you’ve had your adjustment time, check in with yourself about how you feel about your work. Is it sustainable? Are you enjoying it?
Do you believe you can keep doing what you’re doing at the rate you are doing it at? If not, can adjustments be made so that it is sustainable? If so, are you happy with what you’re doing, or do you want to see if adding hours might be an option?
Are you getting enough time for social connections outside of work? If not, is it worth trying to adjust your hours to allow for that?
Focus on your feelings and your needs. You deserve to have work you enjoy and enough time and energy to have your own life.
Be prepared for societal ableism
We live in an ableist society. Sexism and racism are also endemic, but they both have been recognized and studied by a fair percentage of our population.
Bias is very real, and bias against disabled people and the disabled identity is deeply entrenched in our society and its recognition is relatively new and relatively weak. The same goes for the prevention of this discrimination.
The ADA is our primary protection, and it is not well-enforced.
Be prepared for a challenging job hunt. You’re going to be facing all the challenges you are used to facing, plus the challenges of your new minority identity and its associated stresses.
You likely also now have gaps in your resume from your recovery time. You need to be prepared to explain them, and potentially also explain why you believe you are now ready and able to work. You may find yourself facing your interviewer’s bias against disabled people.
They may consider you less reliable due to your condition, or be worried about your health insurance costs if you are applying for a full-time position.
If you need accommodations for your interview, they may also be considering the potential additional expenses surrounding hiring you. They may not even do all this consciously, the bias may be unconscious, but it still may impact your likelihood of being hired.
All you can do is be prepared. You can be proactive in your job hunt, selecting organizations with a focus on disabled people, or a good record in terms of hiring people with disabilities.
You do control when, if, and how much you disclose about your condition.
However, be aware that you aren’t protected unless you have disclosed your condition and that once you get the job you need to keep working with the people within that organizational culture. Protect yourself.
This also means that even more than usual, not getting the job isn’t necessarily a reflection on you and your worth as a human being. Ableism will make it harder, and internalized ableism may lead to you being harder on yourself.
We are taught that needing help, and being the one consistently asking for help is a sign of failure, even though everyone needs help at some point, and often the reason disabled people need help is because of the difference in our needs, rather than the severity.
Our sense of self-worth and self-efficacy(our belief in our ability to successfully take an action) are often damaged by becoming disabled, and that damage is often reinforced by medical trauma, applying for social welfare support including social security disability, and other such experiences.
All of this also will make the interview process that extra bit more difficult, as employers are looking for self-confidence and that very self-belief that has been damaged by becoming disabled.
Once you are working, people are likely to “forget” that you are disabled if your condition is invisible. People, in general, assume that you’re fine unless they assume that you are completely incapable(as they so often do with visible conditions or other obvious differences).
You deserve better than this, and I hope you can get it, but I do want to prepare you for the major possibilities.
Protecting your health
If you do return to work, make sure that the work itself won’t make your condition worse. This means if you are struggling with pain, look for jobs that won’t have you doing things that make the pain worse.
If you are struggling with sleep, you likely want a job with some flexibility in hours, so you can get work done when you are awake, and sleep when you can. If your condition is stress-responsive, be especially aware of how much stress your position is likely to cause you.
Recognize the new limitations and struggles related to your condition and only apply for work that doesn’t endanger your continued health.
My partner Al went through this after experiencing a brain injury that left him with a constant headache. He knew that his headache would be worsened by the loud noises in the position he had prior to his brain injury. That pain, especially combined with being in a high-risk environment where distraction could cause permanent injury, made the position one that he simply shouldn’t return to.
He found work in retail, helping clients with cell phone plans. While it did require focus and attention, a moment’s distraction wasn’t dangerous and he was generally working with one customer at a time. The position was a much better fit for him.
Since he broke his acetabulum, he made sure to look for work that was relatively close to home and allowed him to move around when he needed to. Both of these mean that he can better manage his pain.
He also is working about 30 hours a week instead of 40, but found a position that still gives him health insurance and other benefits while he works fewer hours.
A big part of why I chose self-employment is that my conditions are so unpredictable. I never know when I’ll experience an FND-related symptom shift(though the more stress I’m experiencing the more likely it is), and I’m now also managing migraines.
I no longer have headaches every day, but I can’t predict when the next one will occur or just how severe it might be. With my history of depression and anxiety, I’ve also learned that one symptom increase will often create a feedback loop with my other symptoms, so if I’m not careful, a flare can turn into a series of flare-ups, slowing me down for days or weeks.
When I was working for others, I often pushed myself, making the flares last longer and increasing the risks of those looping flare-ups. Also, I was experiencing additional stress from the travel and whatever happened at work, so I was more symptomatic more often. I also had a lot less energy available for being social and connecting with others.
Now that I’m self-employed, I always have something I could be doing, but I’m setting my own schedule so I can better manage whatever stress I might experience.
I can reduce expectations on tough days or weeks, and do more when I have good days or weeks, without needing to check in with anybody else or deal with their expectations of me. I also can build my work schedule around my social plans, so that I don’t have too much stress at a time.
I’m definitely not saying that that’s the right solution for everyone, but for me, self-employment has been empowering and much easier than working for an employer, even if I haven’t been earning income as reliably.
The fear of losing benefits
The concern that we all feel about losing the income and insurance that disability benefits provide is a very real one. While the money may eventually be replaceable through any form of employment, the fear of not having insurance while disabled can be terrifying as we frequently need our medical care to survive and function.
The amount of income that could cost us our coverage generally isn’t enough to replace it, and in many cases, is even less than the income we would lose!
The rules, as always, are difficult to interpret, written in government legalese, and poorly explained. The cost of a miscalculation is also extremely high. No wonder many of us are afraid to try to work again due to these rules.
It’s also a psychological challenge to have a ceiling to your desired earned income. We’re just not used to it. Usually, our goal is to get paid the most money possible for our work, within our particular framework – but with collecting benefits, we now have a ceiling, over which earning money may actually make our lives more difficult and our finances worse.
Knowing just where the ceiling is, and when and how it may change becomes vital.
You do need to plan carefully, as often these ceilings are so low that many jobs surpass them. You’ll need to seek out an employer who can and will work with you on this front, and you will be their expert in what you can afford to be paid.
Your ideal situation is to get a relatively high hourly pay and work minimal hours per month.
This isn’t always easy to find and often is easier through self-employment/gig work than at a standard job- but you know that you have fewer usable hours in your day, and more work that you need to do in the form of self-care than previously, so it adds up to this need for fewer hours of work, replacing quantity with quality.
You definitely can also calculate the point when it makes sense for you to stop collecting benefits – this may be when you find a position that provides health insurance, or when your ability to earn income passes a certain point. You can calculate that amount and have it as your long-term goal – but with the understanding that you need to stay under the current ceiling unless or until you have a way to get to that point.
Not needing benefits is a laudable goal – but there’s a reason that you are collecting them, and your quality of life is the most important consideration. It’s only worth earning your way off of benefits if it’s in a sustainable manner and your quality of life will improve by doing so.
Conclusion: Grieve your losses, then plan your future work
Returning to work after getting on SSI or SSDI isn’t an easy decision. It is an uphill battle, and one best fought only after you have won many other battles that surround both becoming disabled and losing your intended career.
Losing your career is a distinct and separate loss from becoming disabled, even though the two events often occur at the same time and share a cause.
Society’s definition of work is very limiting, so it will likely help your mental and emotional health to broaden that definition, recognizing that the effort you are putting into your care and healing should be recognized as work as well.
As you heal or find better ways to manage your condition, you may well reach a point where you want to return to traditional work, and there’s nothing wrong with that either.
After you process your loss, take time to focus on what you want to get from working, and how you can get it.
Keep managing your health as a top priority, and recognize the ableism inherent in today’s society, so that you won’t be unpleasantly surprised as you embark on your hunt for work that makes sense for you.
The thought of losing your benefits is scary, especially the insurance coverage that disability insurance provides. You also are now working, likely for the first time, with an income ceiling as well as the constraints that you are used to.
Take the time to explore what would allow you to remove that constraint, so you can create reasonable goals for yourself that allow you to work within your limits and create your best possible life.