My Experience with Chronic Illness: Keep Moving Forward
In our younger years, we often envision a time filled with boundless energy and vitality. However, for some, this idealized notion doesn't always align with reality. While many anticipate ailments to manifest later in life, they can sometimes surface much earlier due to various factors. These unexpected challenges can overshadow what should be our most exhilarating and vibrant years, leading to a cycle of pain, doctor visits, stress, and effects on mental health.
Reflecting on my own experience, it wasn’t until my time at University that these symptoms I had been experiencing on and off, started to manifest more prominently, affecting me daily. I was beginning to have overwhelming fatigue regardless of how much or how little sleep I managed to get. Then came the onset of pain, initially in my lower back before spreading throughout my body predominantly affecting my joints. I would often feel lightheaded when sitting or standing up, and my body struggled to regulate its temperature amongst other things. It felt as though my body was falling apart. At just twenty years old, I was quite scared about the state I was in. Who at my age should feel this way? I was still very much capable of continuing everyday tasks, but there was so much more energy, effort, and discomfort that went into the most simplistic things.
To condense my health journey into a brief summary: From 2018 to 2023, I underwent countless doctor appointments, tests, and relentless self-advocacy to finally find a physician in the US who took my concerns seriously and was able to eventually provide a diagnosis and treatment plan. During this time, doctor's offices became a second home as I sought answers, often leading to referrals to specialists where I underwent examinations and blood tests, only to be told "Everything looks fine!" Obviously, everything wasn’t fine and then I would have to repeat the process with a specialist in a different field. This cycle took a toll on my mental health, compounded by the physical symptoms left untreated due to the lack of a diagnosis.
It wasn't until a Rheumatologist recommended physical therapy for my joint pain that I made significant progress toward a proper diagnosis. During my first visit to the physical therapist, they suggested I seek confirmation for Ehlers-Danlos Syndrome. Since then, I've felt a weight lifted off my shoulders, knowing that I'm not imagining my symptoms. While the diagnosis hasn't alleviated the physical discomfort or provided an explanation for all of my symptoms, it has provided reassurance that my concerns and experiences are valid. It can be really difficult to hear medical professionals say they didn’t find anything abnormal or “abnormal enough” to help you. On one hand, you feel like “Okay good! Everything’s in order!”, but then “Wait, then why am I having this symptom? Why does this hurt or why is this happening?”.
Experiencing these frustrations and challenges so young, particularly during my university years, presented many obstacles. Not only was I faced with the typical stressors associated with higher education and relocating abroad, but I also grappled with physical symptoms such as joint pain when writing or typing, persistent brain fog hindering my ability to articulate thoughts, insomnia, muscle weakness, and overwhelming fatigue that sometimes deprived me of enjoying extracurricular activities, just to name a few. Regular visits to doctors consumed precious time and left me feeling isolated, compounded by the fear of not knowing what was wrong with my body and the anxiety that I may never improve, or worse, that my struggles were merely imagined.
Now, as a twenty-five-year-old navigating self-employment after graduating from university, I continue to grapple with new symptoms emerging or existing ones worsening, despite finding relief through treatment for some. There are days when fatigue overwhelms me to the extent that I need to work from bed or postpone tasks like social media product shoots until I regain enough energy and mental clarity. Even simple tasks like writing can become challenging when my limbs go numb or feel like pins and needles, or when brain fog clouds my ability to articulate thoughts. The fear of being incapable or restricted from pursuing activities I love, such as writing, running my business, going on hikes, and exercising, often outweighs the physical symptoms themselves. It feels like a constant battle against an invisible bully, leaving me worried that it will always be there and will never get better.
In the face of life's inevitable challenges, it's easy to feel overwhelmed and uncertain about how to overcome the hardships. However, what keeps me moving forward and striving for improved health and a better life is my determination not to succumb to adversity. While we've all encountered profound difficulties in our lives, I've found that overcoming past mental health struggles has equipped me with the resilience to confront any obstacle, including my current physical challenges. It may sound cliché, but if I could endure and persevere through those darker times, I am confident in my ability to overcome anything life throws my way, including this. I want to emphasize to others, regardless of age, that they are capable of overcoming health challenges too. Whether young, middle-aged, or older, by prioritizing self-care, listening to your medical professionals, listening to your body, and refusing to let struggles define you, you can emerge stronger on the other side.
It's not about never having difficulties or never feeling like they got the best of you, but about not surrendering to them. Take a rest day and then keep pushing forward with resilience and determination.
In the following section, I would like to share some tips that have helped me throughout my journey. These are changes that have helped me and my specific ailments and may not be appropriate for everyone, so I would highly encourage you to speak to your Primary Physician before implementing any of the following.
Regular Exercise
Whether it be visiting the gym throughout the week, physical therapy, going on hikes, or doing yoga at home, moving my body and focusing on my strength and cardio has been a significant factor in keeping me going. It can be difficult to muster up the energy to go, but I’ve never regretted a workout. It has improved my exercise tolerance, my discipline, and my overall health.
Healthier Diet
This should go without saying, but what you put in your body matters. I will never claim to have the healthiest diet! I love ramen and chocolate as much as the next person - but balance is key. I make sure to eat primarily home-cooked meals over eating out. Don’t forget a daily vitamin to make sure you’re not missing out on any nutrients.
Making Time for Rest & Relaxation
I know a lot of people don’t have the privilege to get the rest and relaxation we need, but whenever you have the time and space to make time for yourself, don’t neglect yourself! Give yourself that space to have a moment of peace. Whether it be in the mornings when you’re getting ready, on your lunch break, your afternoon tea, or an evening bath… take a moment out of your day a do something that YOU love and enjoy.
