When I was diagnosed with Rheumatoid Arthritis, I knew very little about what it was. I was referred to a Rheumatologist because of suspected Lupus. When R.A was mentioned, I was in shock and a bit confused. My initial thoughts were: "I thought only older people had that?" "No one else in my family has that. I thought it was supposed to be genetic? "I hurt so bad! R.A just doesn't accurately show how much pain I'm in. I thought it was just joints?" I was pretty confident my Rheumatologist was wrong. I left that office that day with several new medications and I hate to admit it, but the thought crossed my mind that he must diagnose all his patients with this.
I was so wrong. In fact, I look back at that Rheumatologist and feel incredibly blessed to have met him. I had seen other Rheumatologists in the past and they all dismissed me. My labs just didn't meet the criteria. But this Rheumatologist was different. He believed me! He was not going to let me suffer another day longer. Since that day, I have learned so much about Rheumatoid Disease and what it REALLY means to have it.
So, what is Rheumatoid Disease?
Rheumatoid Disease is not just limited to the joints. It is a systemic disease. Which means it can affect the entire body. When I was first seen by the doctor, I had been experiencing pain for a few years. I had been experiencing serious fatigue and any kind of walking was very difficult for me. The pain also took a toll on my crafting. Any kind of writing or painting made my hands and wrists hurt almost immediately. I dreaded getting out of bed in the morning. Any movement hurt. I would lay in bed as long as I could until I had no choice but to get out. It was devastating to go through.
Rheumatoid Disease is not just limited to older people either. The onset age of Rheumatoid Disease can happen at any age. Even young children can be diagnosed with Juvenile onset Rheumatoid Disease.
I have also learned that Rheumatoid Disease is not exactly genetic. Although, having a family member with the disease increases your risk. Rheumatoid Disease has many possible causes. The environment and any toxins you are exposed to can increase your risk. Your stress levels and behavioral health can also play a role. It has been found that some infections can also increase your risk. I will never be completely sure what the cause was for mine. But I am fairly certain that stress and behavioral health were key factors in my Rheumatoid Disease. Three years after I was diagnosed, my daughter was diagnosed with Juvenile Onset Rheumatoid Arthritis. It is believed that her risk factor was raised because of genetic factors from me.
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The most important thing I wish people knew about Rheumatoid Disease is the toll it takes on all parts of our lives. My family and friends did not understand how someone with Rheumatoid Disease could be so sick. They thought of me as lazy and a complainer. They would become so angry with me whenever I would have to cancel plans with them. I was living day to day. I never knew what my pain was going to be like the next day. But, just like me, they had the same beliefs I did when I was diagnosed. That only older people got the disease and it only affects the joints.
One thing I really wished my family and friends would have done was spent some time learning about Rheumatoid Disease. I would try my best to explain it to them, but they would often become annoyed. I was experiencing so much guilt from letting them all down all the time. I quit sharing anything about it with them.
People with R.A. are not lazy and we would do anything to not feel this way. It's a heartbreaking life to live when you feel that poorly every single day.
Since starting treatment, I have better days now. Not every day is a struggle. But I still have those times where I wish people had a little more grace with me. I am not looking for sympathy. But a simple gesture of understanding and forgiveness means the world to me.
~ Elizabeth (Texas RA Mom)
You can learn more here: Rheumatoid Awareness Day
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