Losing your job due to a chronic illness or disability can be an overwhelming and emotional experience. Whether you’re currently facing the uncertainty of job loss or have already transitioned out of the workforce, it’s essential to recognize the myriad of emotions you may be feeling, from sadness, to stress, to anger.
While there are practical steps to help you manage the emotional and financial stress associated with chronic health conditions, I also don’t want to offer toxic positivity. Realistically, there are millions of people with chronic illness and disability who can only work part-time or in jobs they are underqualified for. Many cannot work at all.
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According to the U.S. Bureau of Labor Statistics, in the United States in 2020, only 17.9% of people with disabilities were employed.
In Canada, the Labour Force Survey showed that in 2022, while 65.1% of persons with disabilities were employed, the employment rate for those with severe disabilities was only 26.8%. Additionally, another report showed that in 2019, persons with disabilities in Canada earned 79 cents for every dollar persons without disabilities earned.
I find that there is a lot of toxic positivity within the chronic illness and disability communities, both online and in person. On one hand, this is needed. Being diagnosed with an illness does not mean your life is over. At the same time, I think it sometimes prevents us from recognizing just how much your life can change. It does not mean that you are less valuable or worthy – but I don’t think it’s ableist to recognize that for many people, severe health issues come with huge losses.
Losing your job and your ability to work is one of those huge losses.
The Realities of Job Loss
If you have never lost your job due to chronic illness or disability, or have never faced the serious risk of never being able to work again, you probably can’t understand how much it can change your life. Not only have you lost your primary activity, but you’ve also lost your sense of security, your ability to financially contribute, your idea of what could have been, and for many, a huge aspect of their identity. It can take years to truly grieve the loss of your career.
Many people’s identities revolve around their job or career, and getting sick can feel like you’ve had that ripped out from under you. You may feel like you need to re-evaluate your entire purpose. You may feel like you can no longer be a productive member of society. Or you may feel like you need to give up your dreams or settle for jobs you are underqualified for or are treated poorly at.
As such, job loss can often lead to a loss of social identity. It may also isolate you even further as you no longer have work colleagues that you see on a regular basis.
Additionally, job loss and unemployment can be stigmatizing, regardless of the reason. I think this is especially true for people whose identities previously really revolved around their jobs. There is a lot of shame and stigma surrounding those who are required to live off social benefits rather than being able to ‘earn’ their way through life. You will always meet people who make derogatory comments about those requiring social assistance and dealing with job loss.
Balancing Reality and Positivity
It’s normal to feel a range of emotions, from sadness and devastation to fear and confusion when you’re experience job loss. Acknowledge these feelings and understand that they are part of the grieving process for the loss of a career. It’s ok to be really really sad. It’s ok to cry and be upset and envious and jealous of others. It’s ok to be scared for your physical, mental, and financial health. It’s ok to worry about what your family, friends, and strangers will think. Whatever you’re feeling, trust me, it’s ok. Plenty of studies have shown that job loss is one of the most stressful experiences a person can go through in life.
I don’t want to say that one day you might get better and be able to work again, because that’s not necessarily true. Some people will, but many won’t. And even for those who may be physically capable of working under some circumstances, they may never actually find a job that works.
I know many people with chronic conditions that could still allow them to work if only they had more flexible hours, or part-time hours, or remote work, or unlimited bathroom breaks, or could sit while working, or whatever minor change that would help them, but cannot work because they cannot find a job that permits these accommodations.
For many people, there are not enough accommodations, social supports, and legislation in place to allow them to contribute in a traditional workplace despite their chronic disease. Until there is major societal reform, this will continue. And in a tough job market, it’s unlikely that these changes will come anytime soon.
How Do You Cope with Job Loss
1. Evaluate Your Health
The first step is to take care of your physical health. If your illness or disability is not stable or being managed, that’s what you need to prioritize. Consult with healthcare providers to understand your physical limitations and develop a plan for managing your chronic condition effectively.
Once you’re in a more stable position in terms of your physical health, sit down with your healthcare team to really take stock of where you are and how they envision your illness progression. Is this a chronic illness? If so, how long is it expected to last? Contrary to popular opinion, a chronic illness does not necessarily have to last forever. In Canada, a chronic condition refers to one that is expected to last at least one year.
Is your illness expected to progress and get worse, or could it get better? Is your current inability to work expected to last for a year? 5 years? Forever? Your management plan will likely be significantly different based on what your doctors anticipate.
The key here is to be realistic. This part can be incredibly difficult. If the answer is that you are likely to be unable to work ever again, that is so hard to hear. You may not truly understand what that means for weeks or months to come. And that’s ok. But you need to be able to set up a baseline of where to start from to deal with the imminent changes stemming from job loss.
If trying to deal with everything at once is too much, just focus on the short term. How are you going to get through the next 3 or 6 months?
Does your job provide short-term disability or long-term disability benefits? Are you eligible for employment insurance? Your supervisor should be able to guide you to the right people to talk to about these benefits.
2. Seek Support
First, now that you’ve taken stock of your immediate needs, figure out where you need support and where you can get it from. Assuming you have a health team in place to deal with that component, what else do you need help with?
Do you have children and can you continue caring for them right now? If you need help caring for them, do you have friends, family members, or babysitters that can assist? Do they need to be driven to school or sports – and can another parent help your family out right now? If not, consider speaking to a hospital social worker about whether there are any programs in place to help provide care.
Do you have pets? Are you able to continue caring for them? Realistically, the answer may be no. I was totally unable to take care of my cat when I first got sick. I moved back in with my parents who helped take care of her for the first six months. Even now that I live on my own again, I put in certain measures to make caring for her easier.
Once you have those immediate needs taken care of, connect with support groups, social workers, and online communities that cater to individuals with chronic illnesses. Sharing your experiences with others who understand can provide invaluable emotional support during this challenging time. Many with chronic conditions have gone through job loss and can empathize and provide tips on what you’re going through.
Additionally, consider prioritizing your mental health care by seeking guidance from mental health care providers. Addressing the unique challenges associated with chronic illness, which can include the inability to work, is essential for overall well-being.
3. Financial Management
This part sucks, but may be necessary. If you and your healthcare team determine that you will not be able to work for a significant period, or ever again, you will need to come up with a financial plan. A financial plan can provide stability and alleviate some of the stress associated with ongoing medical expenses amid job loss.
The first step is to explore what financial assistance options are available to you, such as disability benefits, and review your health insurance coverage. These vary from country to country and state to state, so make sure you’re looking at what specifically applies to you. Plus, how long you worked and where you worked may determine what benefits you are eligible for.
The reason for your job loss may also affect your benefits. Many people with health issues end up getting fired for a variety of issues such as too many absences due to their medical condition. If you are fired, as opposed to quitting your job, you may not be eligible for some benefits like employment insurance. However, you never know, so it’s always worth applying anyway.
While disability benefits are a necessary lifeline for many, these are often very difficult to get. For most people, it takes years to get approved, even with well-documented disabilities proving your inability to work. And once approved, disability benefits are rarely enough to truly live off. Calculating in exorbitant health costs such as hospital visits, treatments, and prescription medications, plus the rising cost of living, these payments are a fraction of what you actually need to live off.
The application process is lengthy and complicated, and difficult to complete for most people even when they’re feeling their best. See whether anyone can help you apply, such as your doctor, employer, or a hospital social worker. While you may get backpay once you are approved for disability benefits, it may take you 3-4 years to get approved. So it’s important to come up with a plan on what to do between your job loss and when those benefits may come through.
4. Know Your Rights
Familiarize yourself with disability legislation and relevant laws that protect individuals with chronic health conditions. In the United States, that’s the Americans with Disabilities Act (ADA). In Canada, federally it’s the Canadian Human Rights Act, or provincial and territorial legislation, depending on who your employer is.
Eventually, you can explore options for reasonable accommodations to see whether that would allow you to return to employment. Employers are required to provide reasonable accommodations up to the point of undue hardship.
5. Acknowledge All That You Have Lost
Realistically, job loss leads to more than just, well, job loss. You’ve likely also lost:
- Your professional and social identity
- Your daily routine
- Purposeful activity and feeling like you’re contributing to society
- Your sense of security and stability
- Your independence
- A daily routine
- Self-confidence
- A feeling of control over your life
And you might have a lot more to grieve than just what comes along with job loss. Your may have lost things due to your medical condition as well, including things like:
- Friends and family
- Romantic relationships
- Upcoming trips or the ability to travel
- Your overall health
- Your mobility or independence
- The ability to eat (this may seem super specific but yes, I literally lost my ability to eat completely)
- Your hobbies
It’s so important to take the time to recognize all that you have lost, and realize that it’s ok to be sad about it. It’s okay to have bad days. You are allowed to grieve the life you thought you would have.
6. Re-evaluate Career Goals
Take the time to reassess your career goals and explore alternative paths that align with your abilities and interests. Contract work, freelance opportunities, or part-time roles may provide the flexibility you need over a traditional full-time job.
Consider remote opportunities that allow for flexibility, helping you balance your health needs with professional responsibilities. While remote work is more common than before, many employers have begun demanding employees return to the office. It can be very difficult to find a job that will allow you to permanently work from home, but maybe a hybrid option would work for you and your employer to allow you to return to a traditional work environment part-time.
7. Embrace the New Normal
This is another really hard step for many people. However, accepting and adapting to a “new normal” is crucial for managing chronic illnesses. You might have to undergo several lifestyle changes. Your job loss may just be the tip of the iceberg. You may feel like you’ve had to give up on your plans and dreams. And like I said, I won’t sugar-coat it. Many people have identity or existential crises when they go through job loss and can no longer work. However, slowly, you will start to adapt. And once that happens, you can focus on creating a balance that prioritizes your health and well-being and prioritizes your quality of life.
Coping with long-term uncertainty is something you just have to get used to with a chronic condition. It’s not easy, and it’s definitely not fair, but here we are. You will eventually develop new hobbies, new plans, and new dreams. You will come to recognize that your life is not over even if it’s nothing like what you imagined for so long.
In Conclusion
Job loss due to chronic illness is undeniably challenging, but it does not mark the end of your story. By acknowledging your emotions, seeking support, and proactively managing your health and career, you can rebuild your life and find fulfillment beyond the constraints of traditional employment. Remember, you are not alone in this journey, and there are resources and communities ready to support you every step of the way.
Just like having a job did not increase your worth or value as a human being, losing your job or being unable to work also has no impact on your worth whatsoever.