Living with a Connective Tissue Disease

The following article is about my own experiences. This information and opinions in this article reflect the opinions of the author.

After living in pain for a few years, I finally decided to go to the doctor. I was hoping to find answers even though I had little hope that I would get them. I had heard so many stories of people trying to find answers and either having to wait years to find them, or never getting an answer at all. 

When I went to the rheumatologist they did a lot of tests and took a lot of blood work. When I went for the results I wasn’t shocked by the little answers I received. With the exception of some solid findings there wasn’t enough to really narrow down my symptoms to any one thing. 

I have the onset of symptoms for a multitude of autoimmune diseases but not enough of anything to narrow it down to just one diagnosis. Not getting a real diagnosis feels hopeless. It feels like I hit a wall or a dead end and don’t really have a direction of where to go next. I know this is a reality for so many other people. So many people never get answers and I figured I shouldn’t be sad because I am not alone. 

My “diagnosis” was an undifferentiated connective tissue disease. This basically means I have the onset symptoms of a connective tissue disease but not enough of any symptom to mean one over another. Although I finally knew some of the reason behind my pain, symptoms, and high blood markers, I still did not have a specific answer. I felt really defeated but at least I got something. 

I have to routinely get blood work and go to the doctor to monitor the progression. I was also put on medicine to try to slow the progression of whatever the disease ends up being. 

Connective tissue diseases are frustrating because they are so invisible, yet can be so debilitating. Many people who have autoimmune issues experience this struggle to feel accepted in the world because other people cannot see their disease. It is also a struggle to do daily things and get through the day but many people cover it up or hide it. 

I feel like I am always expected to be strong and push through. Despite the physical symptoms I might be experiencing, I feel like I have to hide them. It has been hard for me to accept that there are some times I have to take it easy or change the way I do things. It’s been a balancing act to be ok with letting people see this part of me while also not feeling weak for changing any part of my life. 

When you look at people you can’t always know what is going on in their lives. There are so many diseases that are not visible from the outside. These invisible diseases can be even tougher than visible ones because people don’t know they are there. 

Always treat people with kindness and offer a helping hand to anyone you can.