Coping with Chronic Illness: An Intimate Guide to Navigating Life

Jun 17, 2023

Living with a chronic illness can often feel like navigating through a labyrinth. Each day presents a new challenge, a new twist in the path. This is my reality living with multiple chronic illnesses - Small Fiber Neuropathy, Dysautonomia, Gastroparesis, and Ehlers-Danlos Syndrome. I am intimately familiar with the daily struggles, the feelings of isolation, frustration, and fear that often accompany these conditions. But I have also found strategies to manage these feelings, to push through the pain, fatigue, and myriad of other symptoms. This blog post is my attempt to share my journey, in the hope that it might provide some solace and guidance to others experiencing a similar journey. I want to acknowledge upfront – it's not easy. But you're not alone.

Understanding Chronic Illnesses

Living with chronic illnesses means that every day is a new adventure in managing symptoms. Here’s a brief glimpse into what it means to live with the illnesses I have:

1. Small Fiber Neuropathy: This neurological disorder impacts the nerves that provide sensation to the skin and control the function of autonomic nerves (those that control body functions like heart rate and temperature regulation). Symptoms often include severe pain and abnormalities in sweating, bowel and bladder function, and blood pressure.
2. Dysautonomia: This refers to a group of conditions causing the autonomic nervous system (the part of the nervous system that controls involuntary actions like heartbeat and digestion) to malfunction. This can lead to lightheadedness, fainting, unstable blood pressure, and a host of other symptoms.
3. Gastroparesis: This condition affects the muscles of the stomach, preventing it from emptying properly. It can cause nausea, vomiting, abdominal pain, and a feeling of fullness after eating only a small amount of food.
4. Ehlers-Danlos Syndrome: This group of disorders affects connective tissues, which provide support to skin, bones, blood vessels, and other organs. Symptoms can range from overly flexible joints that can dislocate to skin that's translucent, elastic, and bruises easily.

The constant companion of these illnesses is chronic pain and fatigue. Imagine your worst flu fatigue, then imagine it never leaving. That’s a glimpse into chronic fatigue. Now imagine having an aching body all the time, similar to how your body aches with a high fever. That's a glimpse into chronic pain.

While every individual's experience with these illnesses can vary, one thing remains constant - the need for effective coping strategies.

Coping Strategies

1. Self-care is paramount: Living with chronic illnesses like Small Fiber Neuropathy, Dysautonomia, Gastroparesis, and Ehlers-Danlos Syndrome often means dealing with fluctuating symptom severity and a host of other challenges. One of the most important lessons I've learned is to prioritize self-care. It's not just a luxury - it's a necessity for managing chronic illness. It might mean scheduling a relaxing bath, taking time out for gentle exercise, or simply ensuring you're taking your medications as needed.
2. Distract your mind: Distraction can be an effective strategy for coping with both chronic pain and other symptoms. It might not always make the pain go away, especially if it's severe, but it can often help to lessen your focus on the discomfort. Whether it's immersing yourself in a good book, catching up on your favorite TV series, or working on a hobby you love, a positive distraction can make a world of difference.
3. Integrate strategies into your routine: Your daily routine can and should accommodate your self-care strategies. For me, this means scheduling medication times throughout the day and making time for mindfulness and other techniques when they're needed. It's about making your health a non-negotiable priority.
4. Find what works for you: Not every coping strategy works for everyone, and that's okay. For example, while many people find meditation helpful, it just doesn't work for me. The key is to keep trying different strategies until you find what works best for you.
5. Practice mindfulness: Mindfulness involves taking inventory of your body and what you're currently feeling. For me, it's about acknowledging where I feel pain and the intensity of my symptoms. It's a reminder that we've been here before, and things do get better. It's an ebb and flow.
6. Scheduled worry time: This technique involves setting aside a specific time each day to worry. For me, that's 20 minutes. It might sound counterintuitive, but it can actually reduce overall anxiety. By confining your worries to this time slot, you can free up the rest of your day.

Remember, the goal isn’t to completely eliminate symptoms or to pretend they don’t exist – it’s to find ways to manage them, to improve quality of life, and to continue engaging in activities you enjoy, as far as you’re able.

Busting Misconceptions and Navigating Relationships

Living with a chronic illness often means dealing with a barrage of misconceptions. From well-meaning but misinformed comments like "it's all in your head" or "you're too young to be in that much pain", to the frustrating assumption that we can simply "power through" chronic fatigue. Let's set the record straight: Chronic pain and fatigue are real and valid experiences that can affect anyone, regardless of age. And no, we can't just "power through" chronic fatigue. Our bodies need rest and ignoring this fact only exacerbates our symptoms.

Think of it this way: if we took every symptom a person with chronic illness experiences and gave them all to someone who's perfectly healthy, they'd likely be rushing to the hospital. That's what we live with every day.

Navigating relationships while chronically ill can be a minefield. For me, it meant strengthening bonds with my family but also losing many friends who perhaps didn't understand what I was going through. It's a tough reality, but one that is unfortunately common when dealing with chronic illness.

In the midst of all this, I've found solace in my hobby turned career - graphic design. Having something I am passionate about allows me to detach myself from everything else going on and provides an essential escape. Immersing myself in graphic design work, I'm not just a person battling chronic illness. I am a designer. I have an identity that isn't solely defined by my health. And sometimes, when I'm deeply involved in a design project, I can even distract away the pain or symptoms for a while.

In the journey of living with chronic illnesses, it's essential to remember that while our experiences may be different, we can find unity in our shared challenges. From self-care practices and coping strategies to personal experiences and impacts on relationships, the world of chronic illness is complex. However, it's through our shared stories and experiences that we can truly begin to understand the profound impacts of chronic illness.

Now, I'd love to hear from you. How have you navigated life with chronic illness? What strategies have you found helpful, and how has it affected your relationships and day-to-day life? Please feel free to share your experiences with me on social media using my handle @AestheticAlch. I look forward to hearing your stories, and I'm excited to continue building a community of support and understanding around chronic illness. Remember, together we are stronger.