It is Monday and since I hate Mondays, I tend to vent on Monday. Today’s vent of the day is Rheumatoid Arthritis ignorance. Maybe, the title is a bit blunt or direct, but when I have been known to be otherwise?
Studies show that most people do not understand very much about rheumatoid arthritis. There are many conceptions and I am sure, if you have RA, you have heard all those misconceptions. One of the biggest confusions (misconceptions) about RA has to do with how serious of a condition it is. The majority of the population does not recognize how much pain and suffering is involved and that it can lead to serious disability.
The Medical Professionals
While I can complain about the average Joe who doesn’t understand RA, he isn’t the problem with it comes to ignorance. I am worried about the doctors who don’t seem to think RA is a big concern.
On Wednesday, I have an appointment with a new rheumatologist. The reason I am about to fire my current one is, for one, she doesn’t hear a word that comes out of my mouth. Second, she does not encourage me to find out all I can about RA nor does she suggest alternative therapies. Medications are not the only route for patients and my current rheumy does not seem to understand that. She has never read an RA blog nor does she have RA so she does not really understand what it is like living with RA. You would think she would make the time to learn and understand from a sufferer’s perspective and not just a medical one. For me, such thinking is ignorance.
Ignorance is harmful because persons who suffer aren’t receiving adequate support from those who are supposed to give it. Further, ignorance forces patients to wait years for a diagnosis. Doctors outside of the field of Rheumatology have little or no understanding of RA and they do not know how to properly diagnose and/or encourage early treatment. In the meantime, not seeking treatment can cause damage and wreck havoc the entire body. People cannot seek treatment if that do not know what RA symptoms are or how life threatening RA is. I am sure that many of us who have suffered had a long road to diagnosis and the years of frustration are still on our minds.
Friends and Family
For anyone suffering from a chronic disease, you know that your condition is hard on your relationships. Your friends and extended family will have to go through some emotional adjustment and learning in order to understand how your disease affects you and impacts their lives. One thing that many sufferers of a chronic condition go through is that they don’t quite understand why no one gets it and why they are alone in their suffering. Family and friends don’t get it and they probably never will and we should not expect them to. We have to understand that they can’t fully grasp what we are feeling because they are not the ones living it.
Some of our friends and family will adjust remarkably well and focus and work on being supportive and others will need more time. On the other hand, there are those who will struggle with the issues and focus on how your diagnosis affects them. The ones that adjust are ones that take the time to find out what it is your going through. The ones that don’t will probably be the ones that never will, and in my case, I am better off without them.
The one thing that we all need to understand is that we all have learning curves and we will all make mistakes along the way. When it comes to our family and friends, we are the experts on living with our diseases and hurtful statements and behavior, from those that love us, will happen. What we have to realize is that those making the effort to learn are doing it because they love us and so we have to allow them to learn and to help them understand when we see they clearly don’t.
Rheumatoid Arthritis may pose challenges for us, but at the same token, we can accept it as a gift. It will, for one, strengthen the relationships in our lives because our relationships become more about we really are and not what is on the surface. Further, if you can show the people in your life that you can roll with the changes, the transitions will be a lot easier on them.
In the End . . .
There are a lot people including our medical providers, family and friends who don’t really understand what it is like living with RA, FMS, or the many chronic diseases out there. All we can do is try our best to make others understand, and if they don’t, we still have lives to live. So, focus on the relationships that remain strong and that stand the tests that life poses, and forget about those that don’t. Remember, ignorance will be there only if we allow it to be.