Feeling the pain and fatigue, what do you do! What can you do! Does anyone really understand what it’s like to be a prisoner to a disease that will never let you go. That disease, Rheumatoid Arthritis.
Take a look at us, we all have different looks. Some of us look perfectly normal, some of us semi normal, some of us have deformities, some of with canes and walkers, some of us in wheelchairs and some of us even bedridden, so our looks with this disease comes with many faces. Faces in pain, faces with tear stains, faces with fake smiles, faces of frustration, faces showing fatigue, faces of confusion, faces of loneliness and faces of hope. There can be so much misunderstanding about what we should look like when we have a chronic disease but our faces may not tell our true story.
Do people really get that for many of us we may not have the physical disabilities but we are suffering with the aches and pains in our joints that leaves us bound to a life with painful movement causing us to stay in one place more than we want to. Simply because our looks can be deceiving, we end up facing enormous backlash from those who tend to believe we are liars looking for sympathy playing games with an awful illness. In reality seeing who we are may not show what we are “a person living in pain each and every day”. A pain that cannot be measured in numbers because the levels sometimes don’t go that high. A pain that you can’t describe because it’s not like anything you’ve felt before. A pain that scares you so much but you’re even more afraid to share with those in your life because they just won’t understand or they might be afraid they’re losing you. This is what Rheumatoid Arthritis does to its victims. You just don’t know.
Is it understood what kind of sadness and depression we face daily because our abilities have been stolen from us. Does anyone understand what it’s like being unable to live a normal life. A life born to live to its highest but can be taken to its lowest by this disease we have, Rheumatoid Arthritis. We never knew we would be trying so hard to put one foot in front of the other while trying to figure out where that would lead us. We know where we want to go and what we want to do but so many of our wants have been slowly ripped out of our lives. The few times we may get lucky enough to do some of these things, we pay the price for it later. Our bodies cry out in pain as we cry along with it. We cry because we are happy we were lucky enough to do something we wanted but sad and angry because this is what our lives have come too. Being unable to do simple things bring more pain because if you can’t do simple things then the harder things are simply a hope or a wish. You just don’t know.
When people see us cry and ask why, it’s because we are so overwhelmed with everything that we’re going through. Do they think we’re feeling sorry for ourselves, maybe we are sometimes, we are entitled. The burden we carry each and every day is heavy and at some point we are bound to break. The depression is real, the loneliness is epic, the isolation finds us hiding in rooms alone because explaining our tears so many times fall on unsympathetic and deaf ears. People wonder why we fight this disease alone, it’s because many don’t understand it and don’t want to. It’s not the crippling disease they’ve come to know, so for those who look okay to them, it’s a question of “what’s your problem”. We all find ourselves alone sometimes dealing with this disease trying to figure out how best to function within and outside of our family. We never want to be alone in this battle but we are and it’s no fault of our own. Loneliness and isolation, You just don’t know.
Rheumatoid Arthritis, what is it? Our definition: deceiving, devastating, unpredictable, uncertain, forever changing, damaging, unrelenting, most hated, debilitating, life altering and most misunderstood. True definition: a chronic autoimmune disease in which the body’s immune system which normally protects its health is by attacking foreign substances mistakenly attacks the joints. This is not a simple disease or temporary disease and it is not arthritis but one takes control of our lives and leads us down its path that it has for us. Now we hope that you know and understand our journey just a little bit better.