Living with chronic illness: understanding the impact and finding support
Updated: Apr 22
Do you know that chronic illness is responsible for 74% of deaths globally each year?
Managing a chronic disease can be incredibly challenging, not only impacting physical health but also emotional well-being and quality of life.
When dealing with a chronic illness you may be facing pain, depression, fatigue, brain fog, or a range of other symptoms that can be difficult to manage. How do you support someone who is dealing with a chronic disease? How can you support yourself?
It can be hard to accept a chronic health diagnosis. If you or a loved one are suffering from a long-term chronic illness or have recently been diagnosed, you probably have lots of questions. How does chronic illness affect a person's life? What is the hardest part of living with an invisible illness? What does chronic pain do to your brain?
In this post, we’ll explore what chronic illness is, its impacts on self-esteem and mental health as well as some of the practical challenges of living with an invisible condition.
We’ll provide strategies and resources to help you cope. Take a deep breath, you’ve come to the right place.
What is a chronic illness?
First of all, let’s define chronic disease. Chronic conditions are long-lasting, usually beyond three months duration. They can often be controlled with treatment, but are not curable. They can be genetically, environmentally or lifestyle related (or a combination of these factors) and can affect any part of the body.
Having a long-term health condition is a constant battle. I can tell you from my own perspective as a patient and a nurse, it’s a challenging and isolating experience. While chronic health conditions are common, your situation is unique. The support you need and find benefit from will be different than the next person.
What does life look like for someone with a chronic illness?
It’s different for everyone but let’s think about it in terms of symptoms. Symptoms like chronic pain, inflammation, and painful joints can limit mobility and make everyday activities difficult. Nausea can make eating or enjoying dinners with friends impossible, impacting your physical health, social life and support networks.
In addition to the physical challenges, chronic illness can also impact mental and emotional well-being, causing feelings of anxiety, depression, and frustration. Chronic pain and inflammation might cause you to experience brain fog, a slowing of cognition that makes it more difficult to achieve your work or engage in activities you previously used to enjoy.
The long and short of it is; living with chronic illness can impact every aspect of a person's life, from how they accomplish basic household tasks to how they maintain close relationships. Other challenges include managing symptoms, medication side effects, social isolation, cost of care and navigating a confusing and over-stretched healthcare system.
What is the hardest part of living with a chronic illness?
For many people, managing symptoms of a chronic condition can be the most challenging aspect. Chronic pain, fatigue, and other physical symptoms can make it difficult to engage in everyday activities and may require ongoing medical interventions.
Emotional challenges, such as anxiety and depression, can also make it difficult to maintain a positive outlook and engage with the world around you. Coping with these challenges requires a multifaceted approach that includes medical care, support systems, self-care practices, and coping strategies that work for you.
Most of all, you have to be kind to yourself. You are going through an uphill battle. It’s normal to feel tired, confused and fed up. Chronic illness burnout is real. You feel, think about and respond to this entity all day, every day. It’s tapping you on the shoulder constantly, simmering below the surface in the brighter moments and screaming at you face-on in the more difficult ones. Signs of burnout can include physical exhaustion, emotional detachment, and feelings of hopelessness. It’s important to remember that these feelings do not define who you are.
Mental health - psychological reactions to chronic illness
Receiving a diagnosis can trigger a range of psychological reactions, such as denial, anger, and grief. It’s normal to feel like this. The best thing you can do for yourself is to reach out to your support system: family, friends, healthcare professionals, and online resources. You don’t have to go through this alone, and talking about your challenges with those who love and support you can help you to find a sense of peace and acceptance over time.
Another aspect of chronic illness that we don’t talk much about is the shame and self-esteem issues that go with it. Your body isn’t working as it should. You feel broken, defective and like you’re a burden to those around you. You also harbour a deep mistrust for your physical form, your body has surprised you with inappropriate behaviour and now you feel very wary of trusting it any further. This can result in deep feelings of shame. It can cause you to hide away from your support networks and internalise your illness as something you caused.
We’ve talked a lot about support networks, but sometimes it can feel like those around you don’t understand what you are going through. And that’s probably right, only you can know what it’s like to be trapped in your particular brand of sick. But you shouldn’t shut them out because of this. Instead seek additional support from other sources (like this blog, for example) or websites that can provide you with access to a network of people who do understand what it’s like.
What can I do to feel better? How can I support a loved one?
The strategies you use to cope will be different than the next person, sometimes it's trial and error to find the best methods for your individual situation. Some activities may not be possible for you depending on your physical state. Here are some ideas and techniques that can help you:
Psychological support
Who can you talk to about this? Even if you’re well and are caring for someone with an illness, you still need support.
Which friends, family members, health professionals, and online sources can you lean on?
Do you like to meditate? Evidence indicates meditation may help reduce chronic pain and depression while improving health-related quality of life.
Are you writing your experiences down? Writing can help us to organise our thoughts and uncover what’s bothering us.
Physical support
How can you support your body physically?
What exercises can you utilise to maintain strength, increase flexibility, and reduce pain?
Is there physical therapy options you could use?
Are you taking a few moments for self-care? Stretching, yoga, getting some sunshine?
Breathing techniques - your lungs are a window into controlling your autonomic nervous system. Harness evidence-based breathing techniques to help shift your body out of fight-or-flight mode and back into ‘rest and digest’.
Optimising your sleep: insomnia is very common amongst those who suffer from a chronic health condition and getting better sleep can make you feel better, make it easier to cope with pain and can improve your energy levels, combatting the fatigue often associated with being chronically unwell.
Chronic illness is a cruel mistress and living with a chronic health condition can be an overwhelming, terrifying misery for both the person suffering and their loved ones. The physical symptoms can be challenging, and managing the emotional toll can be just as significant. You are not alone. Remember to take it one day at a time, or even just a moment at a time. Be kind to yourself, seek support from those who love you and remember, it’s not your fault this happened to you.
PS. There are a plethora of chronic illness quotes out there, but I think this one from Lady Gaga, who suffers from fibromyalgia, represents the lived experience of chronic illness simply and perfectly:
People need to be more compassionate. Chronic pain is no joke.
It’s every day waking up not knowing how you’re going to feel.
Remember, that compassion should be towards yourself too.
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