Existing To Survive

 

The stories I could tell, the pain I have felt, the things I have lost living with Lupus; I suppose we shouldn’t call it living then, but more like existing, yes that’s it, that’s the word I’m looking for…existing. So, when you feel as if you’re only existing what do you do? How do you cope? How do you make it from day to day without throwing in the towel? The best way I can tell you how is just by getting up each day and try, you have to try even when you feel like you have no reason to, because believe me when I say that even when you feel that way, there is always a reason. Though you may not see it today, tomorrow, or even a year down the line but know and hold onto the fact that there is always a reason to go on.  

I was always known as the sick kid in my family and among my friends as early as three years old when I was hospitalized and diagnosed with asthma, growing up with that was not easy but I had no idea that things could get worse. Coming into my teens I never felt as healthy as my friends and I found that to be disturbing as it always made me feel different because I couldn’t keep up with everyone else as I know I should have been. There was always some sort of complaint and regular visits to my doctor’s office, sometimes the blame fell on me that I was either lazy, I’m making it up and even being diagnosed with psychosomatic illness. Now, if you don’t know what that is let me break it down for you, psychosomatic illness is a disease that involves both mind and body meaning it can be a situation in which the mind influences the body to create or complicate an illness. Simply put the doctor believed it was all in my mind and that I was causing whatever harm I was experiencing on myself, I cannot begin to explain how much of a blow was dealt to me hearing that if my own doctor didn’t believe my symptoms then who would?

Somehow, I just couldn’t accept that this was mental and it wasn’t until another doctor of mine sent me in for further testing that I would find some relief and answers that I had been looking for. However, the answer came with even more questions than ever, and my world felt like it was at a standstill. At age fifteen you’re supposed to be out enjoying your teenage years, learning, exploring, and just having fun but how could I do that now after being weighed down with the diagnosis of Lupus? I have never heard this word before so how could I be expected to understand what it was, I know the road that lay ahead of me would be a grueling and long one but my silver lining came in the support of a few dedicated family members and friends who have never strayed from the task at hand of being there for me when I need them most up until this day.

What came next felt like a whirlwind, I had symptoms that I found so hard to explain and recall that I had to make lists of because I couldn’t keep track of or remember them all. Fatigue, tremors, weakness, body pain, migraines, nerve damage, brain fog, hair loss, you name it I’ve had it. I missed so many days of school and I missed out on field trips that only added to the mounting depression I had when my friends would walk me through the many stories of how it went and how much fun they had. Out-of-town trips to see my rheumatologist were the worst as each time I had to go back I knew my prescriptions would just continue to grow, not to mention the fact that I had to do so many blood draws before I could even go. I was confused, in pain, depressed, and stressed which only added as triggers to the disease. Safe to say it has not been an easy journey but still I am here because I have chosen not to give up and continue on with the war that has been waged on me.

I have spent countless hours researching Lupus and what exactly it means for me, at first there was not much data available but in recent years information has been extremely accessible and abundant. I have learnt so much that I now can provide support and information to those who are having to go through this like I did at an early age. Proud and fulfilled does not begin to explain the feeling I receive when I can offer a word of advice, support, or encouragement to someone who is in need of it in order to make it through to the next day. I know how much a small word means from someone to someone who has similar experiences because initially, I had no one to turn to who was feeling or going through what I was. Thankfully now I have a host of love and support from friends with Lupus and similar invisible diseases. I now see the purpose of being given Lupus, I had to learn how to manage this package I was given to the best of my ability.

In years past I continued to define myself by what I am not able to do and bit by bit it destroyed me. I had to go back to the drawing board and learn that I am not Lupus, it’s just a disease I have but it doesn’t have me. I could spend the rest of my days squandering in self-pity, hate, and resentment but where will that ever get me honestly. It’s not a path that I want to walk and no one should ever have to either. So, instead of slowly dying from the negativity and allowing the darkness of it to engulf me I chose to live in the positivity and I allowed that to be my legacy. I have found that acceptance is such an important key to unlocking and understanding that a diagnosis is not the end and it should never define a person, it’s just a piece of the puzzle that is your life.

It’s been fifteen years and I have experienced way more than I ever should living with Lupus. I’ve suffered loss after loss and pain-filled, unexpected days that have been absolute nightmares. I have been robbed of experiences and future prospects that I will never have and that’s one of the most painful things a human being should never have to go through. When all is said and done, I have accepted that I have to live with Lupus for the rest of my life and I have no control over that. What I do have control of is my outlook and reaction towards it, I can choose to let the disease break me or stand up and fight. I have chosen to do the latter and making the choice alone shows me that I am indeed stronger and I have no intention to let it take me out at least not easily or willingly.