Why I Believe Being Diagnosed With RA at Such a Young Age Was Lucky
Receiving a diagnosis is one of the hardest things in life a person and family can go through. You never believe it will happen to you. You don’t wake up feeling “off,” maybe a little achy or stiff, and think this is a feeling you will grow accustomed to as it continues to worsen. You can never fully grasp the concept of what such an event feels like until it happens to you.
To the mother who woke up stiff and achy, it would only make sense for her to believe these feelings were due to the stress of chasing three young children around and staying ahead of chores the night prior. To the athlete who trains hard every day but woke up one morning to a swollen joint, logically she would believe she somehow injured it the night prior or perhaps pushed herself too hard. To the teacher who is instilling knowledge into our future generations or the musician who’s fingers dance across the ivory keys. To the grandmother who is passing along her secrets to her grandchildren, or to the person simply trying to enjoy life and its greatest adventures. It can happen to anyone.
Although the general population believes I am “too young” to have rheumatoid arthritis, I do, and I have for 20 years now. There is a popular stigma centered around the notion of arthritis that correlates to our elders’ pain and arthritis from years of wear and tear. Unfortunately, autoimmune diseases don’t follow a timeline or adhere to such stigmas. As much as I would love to tell my arthritis I’m too young and to come back when I’m 70, I must deal with it in the here and now.
Rheumatoid arthritis is an autoimmune disease; your own body is attacking itself. Osteoarthritis is when you have cartilage break down due to years of wear and tear, hence why it is most common in our elders.
My chronic illness has developed with me, and we’ve grown together. There was no sudden hold put on life. There was no emotional or physical battle trying to understand why I felt the way you did and how to fix it. There was no what-if thinking. What if I had gone to the gym more? What if I swam instead of ran? What if I didn’t do this or that, what if I had done this or that?
When it’s a diagnosis you received shortly after birth, you don’t remember any of the trials and tribulations that led up to the diagnosis. You didn’t have to spend hours a day researching the disease, side effects and symptoms, treatments and remedies, searching for the most innovative options out there. Receiving a systemic, autoimmune disease diagnosis is scary and undoubtedly you go through a grieving stage of pre-diagnosis life and feelings of loneliness. Then comes that first year or so of figuring out what your new normal is and what your flares feel like, when to call the doctor and when to wait it out at home in agony. Not only is it a huge adjustment for the patient, but for everyone around them as well.
Think of it this way — suddenly you are taken out of your home, without anyone, and thrown into another country that speaks a different language and has their own sets of beliefs, traditions, and cultures. Eventually you learn to navigate and fit in, learn the essential part of the language and the general concepts of their culture, but you never regain that feeling of belonging. Slowly your loved ones are brought in, but they must learn at their own pace and are just as clueless as you were originally. They are behind you despite their best efforts and yours to educate them because they cannot fully understand what rheumatoid arthritis really is without having it themselves. This is the general experience of a family receiving this new diagnosis. My early diagnosis allowed me to skip all these steps of acceptance and adjustment. Although my family had to go through some of this, they too could learn as I grew and help adapt as life continued moving forward.
I feel lucky to have received my diagnosis so early in life that I you can’t remember any different. Yes, I did just use the word “lucky.” You’re probably wondering how anyone can consider a chronic illness “lucky.” Rather than being taken out of the world I knew and thrown into a world opposite to everything I once relied on, I simply had to adapt as I came across each situation. I didn’t have to figure it out all at once. Growing up with (juvenile) rheumatoid arthritis was like someone growing up left handed in a world dominated by right handers, simply adapting as they come across something created for right-handed people. Some learn to use their right hand during these situations, and others adapt whatever they are using into something compatible for left handers. With regards to understanding the difference in age of diagnosis in accordance to how it affects the rest of your life, it is as simple as this analogy.
Being diagnosed that young is not all glitz and glamor. Of course, I would have rather not developed this in the first place. Dealing with this as a child, even if it is all you have ever known, still does have some negative effects. Years of pain and struggle, medications and side effects, progression and damage take a toll on not only the physical body, but the emotional and mental wellbeing of the body. One autoimmune disease leads to the next. One medication and associated side effects lead to the next medication. It becomes a domino effect, and the longer this protocol is followed, the more havoc is reaped on your body. I do not know of anyone who doesn’t experience a mental health problem and struggle with their emotions, typically anxiety and depression, after years of built-up emotions from battling RA.
I’ve been asked if I had to be diagnosed with RA at some point in my life, would I choose an early diagnosis or a late one. In these simple terms I would go with the early diagnosis. I understand that a later diagnosis would have meant I’d spend less of my life dealing with disease and doctors, hospitals and medications. As much as I love the idea of having the first half of my life without any disease, I believe it’s been easier for me to adapt physically and mentally at a younger age. With a little love and strength, new and improved medications, I was still able to lead a mostly normal childhood and was very active in music and sports throughout the years. Every now and then there were setbacks, but everyone has setbacks in life whether it is medically related or not.
Unfortunately, we do not get to choose in life, or I would never have chosen this in the first place. However, we must deal with whatever life throws at us — and I am thankful for all the love and support I had growing up and continue to receive.
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