RA and the family fit

Never In A Million Years did we think we would get Rheumatoid Arthritis but we did.  Never in a million years could we have guessed the pain and fatigue would be so bad but it is and Never in a million years did we think people wouldn’t understand this disease but many don’t.  We’ve learned to live with it but we will never get used to it, Never In A Million Years.

What we’ve learned about Rheumatoid Arthritis is that it is unpredictable and we continue to look to others for understanding while we are still trying ourselves to understand all there is to know about this disease.  RA cause more separation than one can imagine and this is for many reasons.  Point being, there are those of us who are fortunate enough to have great doctors in their lives yet there are those who have the misfortune of having ones that fail to understand even if it is their specialty. They lack compassion and the ability to listen and learn what we as patients are feeling and telling them.  There are those who quickly brush off the facts that what has been prescribed is not the right fix for us.  We are made to feel by the very ones that are there to help us that we are “imagining” things when we are only listening to what our body is telling us.  We are there to fight for ourselves when we are made to feel we’re fighting against ourselves.  Is this another form of betrayal by someone who is supposed to understand and support us.  Never In A Million Years did we expect this kind of treatment.

Many don’t know there are many times we are forced to seek emergency treatment where we have been treated less than fair because our symptoms are non-visible but have been described as debilitating pain.   They think,”is that it, pain“.  Could it be that bad that it brought you here!  To those of us who is suffering, yes it is but to those who can’t see or feel our pain, it may just be a matter of interpretation.  No, not all of the doctors are this way but it only takes 1 time or 1 doctor to treat us unfairly while we are crying in excruciating pain to leave us feeling alone and lost and this is something that will never be forgotten. We put our trust in those who treat us but if we cannot depend on them to listen, understand and be open to discussions about our choices, then we are fighting this battle alone.  Isolation, something that we face much more than many realize. Never In A Million Years Did We Think This Would Happen because of a disease.

We wonder why those in our lives slip away.  Do we speak too often of pain, too often of our struggles with our medication or too often of our disease in general.  If yes, maybe that’s because that is our biggest obstacle.  Do they not want to hear what hurts the most today or what can’t be done today because of pain and fatigue or is it like everyone else, you look okay so how can things be that bad.  That all time misread perception that many have about Rheumatoid Arthritis, the disease with the word that confuses so many.  Never In A Million Years did we see this happening.  We never thought this disease would cause so much separation of family, friends and others in our lives.  Isolation with a chronic disease is like being alone in a room filled with people and no one seeing that you’re even there. Where is the support and understanding that should surround us.

Never in a million years did we think we would have to be broken into pieces before people would understand that yes, we really do have an illness that is making us suffer every day in some form or fashion.  I wonder what will it take to make this journey with Rheumatoid Arthritis just a little bit easier for us.  Our medication may not be doing its job, we are lacking in the support and understanding we need, we are so guilt ridden because of our many limitations, the pain is relentless and we can hardly face the day because of fatigue.  So what will it take?  Will we ever the answer that question!!  Life with this disease is very challenging and it is forever changing and until it is understood and accepted as the disease that it truly is, our journey will always be one that we are forced to fight harder than we should have too.

Be Blessed.