Words have power but for us, those words can change who we are. As sufferers of Rheumatoid Arthritis it’s not always easy for us to put our feelings into words nor is it always easy to share what we’re going through each and every day. With this comes a myriad of emotions for why this is happening to us and why we wish this should never be. Talking about our disease is never easy but being able to should never be the issue we have to deal with. Why should we have to figure out a way make those in our lives understand that our disease is a real disease and not something in our head, something made up or something exaggerated. It is a devastating life long auto immune disease that will always be a changing disease but can we keep trying to make people understand when their ears are closed, their eyes are shut and their minds are blank when it comes accepting to how this disease affects us.
Because our disease keeps us constantly going through pain, fatigue, fallout from our medications and sometimes just being an emotional mess, we find ourselves shutting down dealing with our issues as best we can all by ourselves. We turn our feelings inward because we fall short of getting what we expect from those in our lives which simply is understanding, love and complete support causing us to feel like a burden. These expectations aren’t high nor unreasonable, it’s just what is expected from people who love and care about us. The people that we want to share our struggles and feelings with. Yet, we find sharing can be the catalyst that brings more pain and hurt into our lives because we are forced to see the backs of many as they walk away from us and what we’re going through. We are felt to be saying the exact same words, the same old symptoms and course of actions over and over again while we’re left feeling our suffering is falling on ears of misunderstanding.
We long so much to bare our hearts of the heavy burdens this disease leaves us with by sharing not only our struggles but our hopes but how can we if our words aren’t accepted as being the truth and our struggles aren’t seen as the reality they are. So here we are standing alone in not just in our surrounding but in our minds even though there may be many in and around us. We hesitate to answer the question “how we are doing” even though some may honestly care about that or we may refuse to mention our disease for fear of the negativity we might get. You see, no one will own up to the stigma regarding the lack of seriousness felt about Rheumatoid Arthritis and how sick it truly makes us. So running from being labeled some of the unpleasant names we hate, we hide our truths to protect ourselves from the emotional pain of dealing with the meanness that some can throw our way. Putting our true feelings into words can come with sad consequences and that should never be. Why should we have to hide what we’re going through from anyone because we did not choose this disease, it chose us.
Where has our freedom to speak our truths gone? How many times have we ignored questions about ourselves or smiled as if we really didn’t hear the question simply because they will think they’ve heard it all before. They don’t realize our “How Are You” starts with the same pain and fatigue that we left off with the last time they may have asked or it may have gotten worse. What is true about Rheumatoid Arthritis, the pain and fatigue is constant but the levels are different so this is what they will hear time and time again. For us staying quiet is failing ourselves because we are burying the truth as it is. To whisper to ourselves is what we find we are doing because our quest for understanding and getting it is still one of our hardest challenges.
What we have learned closed minds leads to silent words, broken hearts and tears of loneliness. Talking freely about our struggles is something we need and should be able to do without worry. Those moments when you need to reach out to someone but you don’t for fear of rejection, makes us choke back our emotions and painfully deal with this disease alone. This is the reality for many who suffer with this painful, emotional and life changing disease because many don’t know or don’t really want to know exactly what it is we are going through.