How to Manage Mental Health Issues After a PBC Diagnosis

We are told that it is important to take care of our mental health. But in this crazy world where our attention is being pulled in so many directions, it becomes difficult.

Once you add the diagnosis of a rare and incurable disease, it is easy to feel overwhelmed.

The flood of emotions

When I received the diagnosis of primary biliary cholangitis, I experienced so many emotions at the same time. Feelings of fear, disbelief, sadness, anger, relief, and concern for the future all came rushing in at the same time.

All of these feelings and concerns led me to feel anxious. I needed to confront the reality of the progression of the disease. I also had to deal with the frustration of debilitating fatigue, which I also struggled with prior to knowing PBC was causing it.

Asking "why me?" after my diagnosis

I recall speaking over the phone to the clinic when I was diagnosed. I was at work that day and was told it was PBC and I needed to take medication. But not much explanation was given to me at the time.

After that phone call, I went to my car, sat down, and just broke down. The tears and emotional pain that I felt now were very intense. I asked, "Why me? Why now? And why is it happening?"

At that point, there were other things taking place in my personal life that just added more stress and anxiety. I needed to understand that my new normal would look different, and that managing a lifelong medical condition would be my new normal.

Struggling with depression and anxiety

As a result of this diagnosis, I started to deal with depression and anxiety. These caused me to feel like I was grieving the person that I was, and that now nothing would be the same.

I was sad and lost motivation. I barely wanted to leave my home with my family, because I was in constant pain and fatigue. This caused me to separate myself from family and friends. I just shut people out, because I did not know how to deal with all those emotions at the same time.

Choosing to get help through therapy

Depression and anxiety were bad for me. I needed to make a choice: was I going to sit and let my life go by, or was I going to do something about it?

I decided to see a therapist to address the anxiety and depression symptoms. Being able to sit and speak to someone regarding all the feelings and emotions that I had was extremely helpful for me. Each session provided me with the tools to first accept the diagnosis and come to terms with the fact that I needed to grieve my old self.

Finding acceptance and adapting

Allowing myself that time to grieve was important. I learned to accept that I have PBC, but PBC does not have me. I learned that I am not this disease, and I needed to adapt myself to what my new normal will look like.

I needed to accept that things would change. But even with those changes, I still had a life to live — just in a different manner. I needed to make changes in my lifestyle, work, and even my social goals. Learning how to say no when I was not able to do something took a lot for me.

The importance of mental healthcare in PBC

The mental health aspect of this disease is not really talked about with patients after the diagnosis. Doctors give you a diagnosis and prescription, but forget that this patient’s life will change significantly because of this disease.

It is very important that the mental health of the patient is addressed at the time of the diagnosis. It can ensure the patient is able to transition and learn to accept what the new normal is going to look like.

Seeking help is not for the weak, but for those that acknowledge that they have reached a point in their life where a little extra help will go a long way.