Disclaimer: As a future Licensed Clinical Social Worker (LCSW) currently pursuing my master’s degree, I am passionate about sharing insights and information related to parenting, autism and homeschooling based on my personal experiences and research. However, the content shared on this blog is not intended to substitute professional advice, diagnosis, or treatment. Parenting is a deeply personal journey, and while I strive to provide valuable insights, every family and situation is unique. Readers are encouraged to consult with qualified professionals for personalized guidance tailored to their specific needs and circumstances.
Ever wondered, “What is chronic illness?” As someone who has multiple chronic illnesses, I want to chat a bit about what a chronic illness is and how it affects my life. A chronic illness is a long-term health condition that persists for an extended period, often requiring ongoing management and treatment. Unlike acute illnesses that come and go, chronic illnesses stick around, influencing various aspects of daily life.
Living with a chronic illness can be like navigating a rollercoaster ride of symptoms, treatments, and emotions. It’s not just about dealing with physical discomfort; it’s about managing the impact on mental health, relationships, work, and overall well-being. Understanding what a chronic illness entails is the first step toward providing support and empathy to those who are living with one.
What is Chronic Illness?
Defining Chronic Illness
So, what exactly is a chronic illness? Unlike the common cold or a fleeting fever, chronic illnesses are here to stay, lingering in your life for three months or more. Chronic illnesses come in all shapes and sizes, from the well-known ones like diabetes and hypertension to the lesser-known conditions like fibromyalgia and Ehler’s Danlos Syndrome. What sets them apart is their persistence. They don’t just pop up out of the blue and disappear with a few days of rest. Nope, chronic illnesses are in it for the long haul, impacting your daily routines, your relationships, and your overall well-being.
Living with a chronic illness means learning to adapt, finding ways to manage symptoms, and seeking support from healthcare professionals, friends, and family. It’s about understanding that your body might not always cooperate the way you want it to and accepting that some days will be tougher than others. But hey, it’s also about finding resilience, discovering new strengths, and embracing a journey that’s uniquely yours.
Symptoms and Challenges
Living with a chronic illness means facing a barrage of symptoms that can affect everyday tasks. These symptoms vary widely depending on the type of illness but can include everything from persistent pain and fatigue to digestive issues, cognitive impairments, and mobility limitations.
But it’s not just the physical symptoms that make living with a chronic illness challenging; it’s also the emotional rollercoaster that comes along for the ride. Dealing with chronic pain, uncertainty about the future, and the constant need to manage symptoms can take a toll on your mental health.
And let’s not forget the impact that chronic illness can have on your relationships, your work, and your sense of independence. From missed social gatherings to days spent confined to bed, chronic illness can disrupt your life in ways you never imagined. It’s a constant balancing act of trying to prioritize your health while also maintaining some semblance of normalcy.
Impact on Daily Life
Living with a chronic illness isn’t just about managing symptoms; it’s about navigating a maze of challenges that can affect every aspect of daily life. Imagine waking up each morning with a checklist of tasks, except this checklist includes things like medications, doctor’s appointments, and energy levels. It’s like trying to juggle a dozen balls in the air, hoping none of them come crashing down.
From the moment you open your eyes, you’re faced with decisions about how to allocate your limited energy and resources. Do you push through the pain and go to work, or do you take a sick day and rest? Do you attend that social gathering and risk triggering a flare-up, or do you stay home and miss out on precious moments with friends and family? It’s a constant battle of weighing the pros and cons, trying to find a balance between self-care and obligations.
But it’s not just the practical challenges that make living with a chronic illness difficult; it’s also the emotional toll it takes. It’s the frustration of not being able to do the things you used to enjoy, the guilt of feeling like a burden on your loved ones, and the fear of an uncertain future. It’s like walking a tightrope between hope and despair, never quite sure which way you’ll fall.
My Journey with Chronic Illness
In the last 5 years, I’ve been on my own chronic illness journey. I’ve been diagnosed with a few chronic illnesses of my own, and wanted to share how they affect my daily life.
Postural Orthostatic Tachycardia Syndrome (POTS) & Orthostatic Hypotension (OH)
POTS is a condition characterized by an abnormal increase in heart rate upon standing, leading to symptoms like dizziness, lightheadedness, and fainting. OH is a condition marked by a sudden drop in blood pressure when a person stands up, often causing dizziness or fainting.
In my daily life, POTS and OH shows up as standing up too fast and nearly passing out. A lot of salt and monitoring my heart rate. Days where my heart rate is consistently over 150. Exhaustion, fatigue and chest pain. Heart palpitations and anxiety/jitteriness.
Mast Cell Activation Syndrome (MCAS)
A disorder where mast cells release excessive amounts of chemicals, resulting in symptoms such as skin rashes, gastrointestinal issues, and allergic reactions.
In my daily life, MCAS shows up as near constant worry about a reaction. Reactions that show up whenever it wants to. Avoiding known triggers and finding new triggers every day. Constantly carrying allergy medication and my epi pen.
Ehlers-Danlos Syndrome (EDS)
A group of genetic disorders characterized by joint hypermobility, skin fragility, and connective tissue abnormalities, leading to symptoms like chronic pain and joint instability.
In my daily life, EDS shows up as joint hypermobility. Joint dislocations. Chronic pain due to my joints trying to stay in place all the time. Other issues, like pelvic organ prolapse (I will be having surgery in May, hooray!) and abnormal healing.
Endometriosis
A disorder where tissue similar to the lining of the uterus grows outside the uterus, causing pelvic pain, irregular menstrual cycles, and potentially infertility.
In my daily life, endometriosis shows up as near constant pelvic pain and heaviness. Before I had a hysterectomy at 28 years old, excessive bleeding and pain. Anemia due to excessive bleeding. Irregular bleeding, outside of normal cycle and while on continuous birth control.
Attention-Deficit/Hyperactivity Disorder (ADHD)
A neurodevelopmental disorder characterized by difficulty in sustaining attention, hyperactivity, and impulsivity, often impacting daily functioning and social interactions.
In my daily life, ADHD shows up as a lot of executive dysfunction. Hyperfocus and hyperfixation. Medication affects me differently. Struggle with consistency, housework, etc. etc. etc. Just a lot of executive dysfunction and trying to stay on top of everything.
Understanding what a chronic illness entails goes beyond recognizing the physical symptoms. It’s about acknowledging the emotional toll, the financial strain, and the resilience it takes to navigate life with a chronic health condition. So, the next time you wonder, “What is a chronic illness?” remember, it’s more than just a medical term—it’s a journey of exhaustion (physical and emotional) and joy and making the most of everything.