People who live with chronic illnesses often deal with unique challenges every single day. From having to manage symptoms, advocate for yourself, and strive to maintain some semblance of normalcy, it is easy to become overwhelmed by your illness. This can easily lead to chronic illness burnout, or medical burnout, an amalgamation of emotional exhaustion, relentless physical health challenges, and the ceaseless demands of navigating life with a chronic condition. It is a profound and often underestimated aspect of managing chronic illness. Here are the signs and symptoms, the reasons chronic illness burnout happens, and how to manage it.
Signs of Chronic Illness Burnout:
- Exhaustion
- Headaches or other pain
- Depression or lack of motivation
- Falling behind on chronic illness management
- Skipping your medication or other treatments
- Feeling helpless or like you want to give up
Reasons for Chronic Illness Burnout:
The burden of chronic illness is multifaceted; it encompasses both the physical toll on the body and the emotional and mental strain of living with a condition that requires constant attention. For some chronic illness patients, this permeates into every aspect of their daily lives. It might feel seem like basic things like extra equipment that has to go with you everywhere, only eating or drinking very specific things, to only showering or sleeping in a specific way, you constantly have to think about these things, and then implement them. Here are some of the reasons having a chronic illness is absolutely exhausting and can lead to burnout:
Invisible Illnesses
Many people have invisible disabilities or illnesses. For example, it is impossible to tell that I have a chronic illness and physical disability by just looking at me. My medical condition is invisible. As such, it might be harder for others to truly comprehend my daily struggles. I struggle with fatigue, chronic pain, and a myriad of symptoms that are not immediately identifiable. I constantly have to prove myself, like when I need to use a disability parking spot or bathroom. This can also lead to imposter syndrome, feeling like I’m not actually sick enough to call myself sick.
Time-Consuming
With a chronic illness diagnosis, you will likely have to juggle a million things. This includes balancing medications, treatment plans, and a bunch of doctor’s appointments. Managing your illness can be very difficult and time-consuming. Each piece requires meticulous attention to remember, keep track of, and actually do, imposing a huge mental load on those with chronic illness and their caregivers. The medical care you require can be especially time-consuming, especially when you are first diagnosed or going through a flare.
The Emotional Toll
Beyond the physical challenges, chronic illness inflicts an emotional toll that can be just as heavy. Coping with the unpredictability of symptoms, the uncertainty of the future, and dealing with the loss of your former life can all be very difficult to manage and are rarely spoken about. There is a huge push to be proud of your disability and illness. In the words of Kelly Clarkson, “What doesn’t kill you makes you stronger”. Obviously, I believe that I am still worthy and deserve basic human rights, just as all people with disabilities or illnesses do. However, I will happily admit that I wish I had never gotten sick. I wouldn’t wish this upon anyone.
The weight of chronic illness also extends to the psychological journey of acceptance. Accepting the limitations, acknowledging the need for help and self-care, and navigating the emotional highs and lows are integral parts of the burden that individuals with chronic illness carry.
Navigating Social Dynamics:
Explaining chronic illness to friends, family members, and acquaintances becomes an additional burden. The need for understanding, empathy, and accommodations also adds to the weight we carry. It becomes even harder when those close to you do not understand or refuse to learn about your condition, leading to social isolation. Oftentimes, family traditions need to change or be amended. This requires you to explain your illness to absolutely everyone. And if you do that, get ready for unsolicited medical advice from people that just don’t get it.
Advocating For Yourself:
Advocating for yourself becomes a 24/7 commitment, a responsibility that often feels like a full-time job in addition to managing the physical toll of the illness. Similar to having to explain my illness to those close to me, I also often have to explain it to healthcare professionals. Those with rare diseases often struggle because they are seeing a healthcare provider who is not an expert on their disease. It can be very difficult to get an appointment with a specialist, and it could take years for you to get properly diagnosed.
A lot of people have symptoms that cannot be pinpointed to one illness, leaving them in a limbo of being sick without an official diagnosis. This makes it even harder for them to advocate for themselves, in their personal circles, to health professionals, to their employers and insurance companies.
Additionally, there is inequity in our healthcare systems, including racism and other forms of discrimination that many face when trying to seek assistance for their illnesses.
Rare Diseases and Lack of Research:
Rare illnesses are often under-researched, so even specialists may not know how to treat you. For example, my illness, gastroparesis, is very difficult to diagnose and treat. There is no cure and very few treatments. The treatments that do exist have a less than 50% success rate. As such, there’s no real roadmap for the effective management of my illness. Instead, every patient kind of has to go through their own trial and error to see what works for them.
Researching medical conditions, deciphering complex medical information, and distinguishing between credible and misleading sources contribute to mental exhaustion. The weight of sifting through information to make informed decisions can be overwhelming. Researching your own condition is a necessary but often exhausting pursuit.
Balancing Employment and Your Health:
For many, the weight of chronic illness intersects with the demands of a full-time job. Managing the expectations of employers, colleagues, and oneself in the face of chronic pain, depressive symptoms, and the unpredictability of health adds an additional layer of complexity. While people with disabilities have the right to reasonable accommodations in the workplace, the reality is that many workplaces simply are unwilling to adapt to make working viable for many.
In the United States, only 21% of those with disabilities are employed. While some people cannot work, many could work, at least part-time, if they were provided adequate accommodations. Not being able to work, among other things, leads to huge financial strain on individuals and their families. And chronic illnesses are expensive. People with disabilities face a ‘crip tax’, having to pay more to merely survive. For many, health insurance and disability benefits are nearly impossible to get.
Fatigue as a Symptom
Another reason chronic illness can be so exhausting is simply because fatigue is a symptom of many illnesses. On top of dealing with all of these issues, you also need to remember that you are actually physically ill as well.
Combatting Chronic Illness Burnout:
It is so much easier to deal with chronic illness when you have a strong support system involving several people. Always leaning on the same person can lead to caregiver burnout, another burden for those with chronic illness, who may feel guilt for relying on their friends and family for so much.
Understand Your Illness:
The most common illnesses associated with burnout are those that require a complete change in lifestyle. Learning as much as you can about your illness, treatment plan, and your new daily routine is so helpful it can help you feel more in control. Getting a chronic illness diagnosis is stressful. Learning about your illness, and what to expect, helps reduce a lot of stress. Changes to all aspects of your life or your quality of life, takes a lot to get used to.
For example, I had to stop eating completely, which had a huge impact on my life. I couldn’t really go to restaurants or bars or participate in Thanksgiving meals or eat Christmas cookies. I had to give up my hobbies of cooking, baking, and making charcuterie boards. On top of my physical illness, all of this really affected my social life. I’ve had to make so many lifestyle changes, but over time I have learned more about my illness and what I can and can’t do, making it much easier to manage overall.
Seek Professional Help:
As such, for both patients and caregivers, it is so important to seek professional help. Emotional exhaustion, mental health concerns, and the profound impact on daily life necessitate the assistance of professionals. Mental health professionals, chronic illness therapists, and care advocates are equipped with a deep understanding of the intricacies of chronic illness. They can provide valuable insights, coping strategies, and a safe space for emotional expression. A professional can help guide you through accepting your diagnosis and dealing with burnout. Many hospitals will now assign you a social worker or other care coordinator to assist you in managing your health issues in different ways.
Support Networks and Community Organizations
Engaging with social support groups and community organizations dedicated to chronic health conditions can be super beneficial for both patients and their caregivers. Nowadays, there are so many online communities for those with chronic illness, where people share knowledge, experiences, and emotional support.
Spoon Theory
Another way to combat chronic illness burnout is by prioritizing self-care and your well-being. One way of doing so are by embracing ‘spoon theory’, a metaphor for managing limited energy levels. The idea is that you have a limited number of ‘spoons’ each day, and each task requires a different amount of spoons. So for example, eating breakfast might take one spoon, taking a shower might take two spoons, and walking your dog might use up 3 spoons. You might have a different amount of ‘spoons’, or energy, available on different days. You must allocate your ‘spoons’ wisely throughout the day as you only have so much energy to get things done. It forces you to prioritize the most important things. Recognizing that energy is a finite resource, this idea can help you maintain mental and emotional resilience by limiting how much you do in any given day.
Aim for a Balanced Life
Other ways of engaging in self-care include doing restful activities like watching a movie, cuddling with a pet, taking a nap, journaling, or spending time with a friend. It also involves recognizing your limits and setting boundaries, knowing when to decline plans and rest instead.
Look into ways that can make the things you have to do easier. See if you can get someone to drive or accompany you to medical appointments. This is super helpful, comforting, and sometimes medically necessary. Check if any of your appointments can be done online instead of in person. Or, if you have multiple appointments, see if they can all be done on the same day. This can limit how much energy you need to exert. It can also limit how much of your life you feel like you are forced to dedicate to appointments and managing your illness.
Final Thoughts:
Chronic illness burnout is a multifaceted and nuanced challenge that demands acknowledgment, understanding, and proactive strategies. By recognizing the profound impact on mental and physical health, individuals and caregivers can begin to address burnout systematically, paving the way for a more sustainable and resilient approach to chronic illness management.