Two notes before you begin:
Please keep in mind, that this blog is meant to stimulate thought and provide a general overview, do not take this as medical advice for your specific situation. Please consult with your medical providers about your specific situation.
I recognize there is a lot of privilege to be able to say “My health is my priority, I cannot work” because unfortunately there are many people at different stages of illness who are unable to make this choice until it is chosen for them. I want to name this and say that I am not here to tell someone what to do and what not to do, consider all of this in the context of your own life. Additionally, it is not to say that having to step back from work due to being sick is a privilege. This decision can, for lack of a better word, suck. There is a lot of grief in this decision and grief in being sick. I don’t want to ignore other adversities in life that may impact this decision for some people.
The Complicated Question of Working with Chronic Illness
Having a chronic illness is a full-time job, so what about your other job? How can you balance both and when is it time to stop balancing the two?
Chronic illnesses come in many shapes and sizes. The same chronic illness can affect one person quite differently than another, and one person’s experience can change over time.
The question of when to stop working with chronic illness tends to be difficult to determine because many chronic illnesses are dynamic disabilities. Dynamic disability means a condition or impairment that varies in severity and impact over time.
When your health is ever-changing, it can make questions like “Can I still work?” “What accommodations do I need?” all the more complicated.
First, I am going to share some reasons you may want to step back from work or change your approach to work if you have a chronic illness. Following the possible reasons, there are some questions to consider and possible things that may get in the way.
Reasons to consider taking a step back from work due to chronic illness:
Health decline: This can go two ways. One, your health is declining on its own and you need to take a step back from work. Or working is causing a health decline and you need to take a step back from work due to this.
Preventing a health decline: You may recognize that your type of work, hours, or stress levels from work exacerbate your symptoms but not to the point of true decline at the moment. There may be a time to step back from that work if you recognize this pattern so that you are preventing permanent decline.
Symptom management: Managing symptoms can be a full-time job in itself. Some chronic illnesses require constant monitoring, medication adjustments, and lifestyle changes to keep symptoms at bay, leaving little energy or time for work. Some people may find that when they work they begin to ignore their body’s cues for rest or breaks or forget to take their medication or eat food and drink water. If you find that you are unable to take care of your symptoms while you work, you may think about stepping back.
Medical care: Similarly to symptom management, having a job can get in the way of getting the medical care you need. Maybe it is hard for you to take off for appointments, maybe your appointments leave you so exhausted you can’t work. You may need daily treatments, and rest that impacts working hours, and there may be side effects of treatments that impact your ability to work. Stopping work may mean you are prioritizing your medical care and recognizing that working is getting in the way of best practices in the care you need.
Mental health: Juggling working and the full-time job of chronic illness can lead to stress, anxiety, and depression. By spreading yourself too thin you can negatively impact your mental health and unfortunately, you can’t “leave” chronic illness, but you can leave work. It is important to recognize this piece of the equation because worsening mental health will likely exacerbate any medical issues you have. Managing your mental health and well-being is important to managing chronic illness. Our mind and body are so interconnected that your chronic illness can be exacerbated by chronic stress, which may come from your job or spreading yourself too thin.
Your values and quality of life: Determining what is most important to you in life can help make this decision. There is no right or wrong answer as to what your values are- read my blog here for more. Is your health your top value? If so, is leaving your job towards or away from that value? Is your top value being a present parent? If so, is leaving your job so you are not spread so thin between chronic illness, parenting, and work towards or away from that value? Knowing your values is also important to assessing your quality of life. A person’s quality of life requires looking at the big picture of what is most important to you and then determining if the balance of chronic illness and work is causing you to have a low quality of life. Quality of life is not simply the lack of illness, but rather, are you able to engage meaningfully in what you want to do?
There are other things someone may consider when choosing to stop working with chronic illness but health decline, preventing health decline, symptom management, medical care, mental health, and values are some of the main considerations.
Choice vs. Forced
It is important to recognize that if you do not take a break when you need it, a break will be forced upon you. I often talk with clients about “actual rest” and “forced rest”. This means if you are someone who needs to lay down in the middle of the day, and you don’t do that and keep pushing through for a week, you may find your body says “Oops, nevermind we can’t move, we can’t eat, we can’t shower, we can only crash now”. Rather than spending some time laying down each day to ensure that you can participate in activities over the weekend, by ignoring that need, your body decides for you that you are not able to participate in anything for the entire next week. If you read through this blog and think “Yea, I think work is putting too much on me and my illness is asking for a break from working” and you continue forward (which I totally understand) there may be a time when your symptoms and illness worsen and it is no longer a choice. It could be a forced step away from work. This is such a hard part about having a chronic illness because our bodies give us harsh lessons. I think this idea of chosen vs. forced rest is relevant in deciding when to stop working or considering alternatives to your current work situation.
Leaving work can come with a lot of grief, oftentimes we tie our sense of self into what we do for work. It may also be the case that you derive a sense of purpose and fulfillment from work, which makes taking a step back from work all the more difficult. If your health allows and you would like to work in some capacity, there are alternatives to leaving your work entirely including getting accommodations, working part-time, working remotely or hybrid, switching jobs, and more. I will write another blog on this!
Thoughts that may get in the way
“I am not sick enough” - Society tends to lead us to believe we need to be on our death bed or have a specific “good enough” diagnosis before we are sick enough to not work. Life is so much more complex than that. If you notice yourself having this thought try and zoom out, is this something you really believe or has it been said to or around you? Limitations on what “sick enough” is can cause both physical and mental damage.
“If I can technically do it, that means I can do it” - At what cost? You may be able to get through a day of work but then are you crashing and unable to do anything else? Being able to do work really means, being able to do work AND take care of your needs, your family, and your home. It does not mean using 100% of your energy and strength at work so that you cannot function after the workday.
“I will have nothing if I don’t work” - You can derive meaning in your life in a lot of ways, not just through work. And if you stop working full time, it does not mean that you cannot fill your time with meaningful activities that are better for your health and more accessible in general. You may have more in your life if you step back from work because you are not draining your energy and hurting your body any longer.
“What if I am just being lazy?” - Lazy is a term that is thrown around without any context. If you feel unwell and limit your activities because you do not feel good, it does not mean you are lazy. If you are at the point in your illness where you are sitting down and reading this blog to determine if you should take a step back from work, you are not lazy. The world has inundated us with messages that people are lazy for needing rest, not wanting to work themselves to the bone, and other messages that harm everyone but particularly those with chronic illness and disabilities.
The Takeaway
So the question of “Should I still work?” boils down to is your work hurting you or getting in the way of you taking care of your needs. What accommodations or balances can be made? What are you getting from work? What feels like an authentic choice to you and your needs? Give yourself permission to truly explore what you and your body need at this time. Try and recognize any internalized messages from society that have you second-guessing what you know for your body and know that your life can have meaning without work if need be.
If you would like support in processing how your work impacts your health and vice versa, help coping with internalized ableism and other unhelpful thoughts, or would like support in identifying what accommodations you may need please feel free to reach out via my contact form below or by email/phone. I regularly support people who are going through the process of analyzing their work and health balance and would welcome the opportunity to help you at this stage of illness.
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