Living with an Invisible Illness

[Re-write May 2023]

The Pain

Living with an invisible illness can feel isolating and hopeless.

I remember being about 15 years old and complaining about extreme hip pain. It felt like my bones were rubbing against each other every time I moved my legs. The pain became more unbearable the older I got and unfortunately it continued for about another 15 years without a diagnosis.

My life became a trial and error experiment. By the time I was an adult, my hip pain progressed to my lower back, shoulders, feet, hands, acne, and skin rashes. I was reaching a point of chronic body exhaustion. There were occasions when simple actions such as hugging, shaking hands, or even sleeping became painful. This took a toll on my mental health. I just couldn’t seem to get better, nor be able to explain my situation.

I went through countless of doctors, I even tried having a health coach and an ayurvedic practitioner.  I researched and learned a lot about my symptoms and anatomy. I stayed open to all possibilities and lifestyles. In reality, I was in a place where desperation meets determination.

Chronic fatigue meets a strong will
(or is it unprocessed trauma?)

I went through a span of 5 years (in my early and mid 20s) actively focusing on my health. The most disheartening and frustrating experience during this time was when doctors would say, “you’re too young to be having these issues.” like, “No shit, that’s why I am coming to you for help”, is what I wanted to say, but never did. After countless tests, scans, and specialist, I still had no diagnosis.

I eventually turned to internal and holistic modalities. At one point, I acquired a health coach that told me I was in a state of chronic fatigue and that the reason why I stayed productive (at that time) was because, I had a strong will. This was strange for me to hear. I mean, doesn’t everyone feel the way I felt? Isn’t everyone just as exhausted with aches and pains like me? Or was it really just me? 

Before I knew it, I am doing my first yoga teacher training, which honestly saved my life.  Not only did it help me learn the right way to move my body, but it introduced me to an entirely new community focused on holistic, traditional, and indigenous healing methods utilizing food and lifestyle changes.  I lived with minimal pain for some time, but it still wasn’t enough. Read more about my inspiration to do yoga, on my blog.

Out of nowhere, I was bedridden with pain again. I felt defeated. I believed that I would never find answers and maybe I was just being too sensitive.  When my yearly checkup came around again I changed doctors, mentioned my usual pain, and my doctor said something I never heard before… he was going to test me for Lupus. Call me crazy or traumatized by past experiences, but I was in complete denial and to my disbelief, the tests proved positive.  

The day I was diagnosed

With my twin sister by my side, I anxiously awaited for my results. It felt like I was waiting at a pace even drying paint would envy. I was just ready to get back to work. Then the moment came when the specialist told me she was officially diagnosing me with Lupus.

The world froze for a moment and I did not know how to react. I can’t even remember what else the specialist was saying for the next few moments.  My emotions were on a rollercoaster to nowhere. Lost and confused. What the hell do I do now? How do I cope? How in the world am I going to tell my family? What is lupus anyway? I felt scared, sad, angry, but a small space inside of me was also relieved to finally have answers.  

Relief meets Peace

Believe it or not, the relief of finally having answers to my pain gave me more peace than I thought it would. I finally built-up my own strength again, in order to move forward with more focus, direction, and compassion for myself. Self-compassion was a huge game changer for me! I had to come to understand that I was never too sensitive or complaining too much. I was only hurting and now I am healing.

Living with an invisible illness, especially undiagnosed for so long, can be psychologically draining. It really does take a strong will to still get up every morning and pretend to be okay. Unknowingly, I kept my body in chronic stress, just because I didn’t take the time to rest enough. I was made to believe rest was shameful, selfish, unproductive, and, outright lazy. (not my words or belief anymore, by the way.)

On the other hand, I get it. I understand that having a “strong will” was a skill forged out of survival and fear, by the generations before me. I am reminded of that fear with every ache, pain, or flare up. In the same respect, I am also reminded of the strength, wisdom, and love it took for my ancestors to keep their sanity and survive slavery, genocide, war, oppression, famine, and disease. Without them, I would no be here today.

I have come to peace with my situation and I am grateful. I finally feel like I am where I am supposed to be.

 

~Living A More Zen Life~