Depression & MS: my experience

This summer I realized I was reaching the ten-year anniversary of my MS diagnosis. At the time I realized this, I was also hitting a downward spiral. I felt worthless. I felt paranoid that my family didn’t care about me; that they were better off without me. Every crazy, paranoid thought I could possibly have, hit me. Depression can sneak up on you, grab you by the collar and throw you into actions the REAL you would never do.

The most important thing in all of this: I knew enough to tell the people I love when I felt it was taking hold of me.

Not long ago I was hospitalized with another lesion forming on the right side of the brain. I remained there until it stopped and then went home to work on getting better. During this experience, a story that someone once told me came rushing back. It was a story about two best friends and one was hit by a bus while riding her bike in NYC one day. While she lived, the person that came out of the hospital was completely different from the one before the accident. Traumatic Brain Injuries (TBI’s) change people. Saving their friendship, was hard. But the friend remains loyal to the cranky, difficult stranger that no longer likes the same things as she did before the accident.

My doctor once said the lesions on my spine were the equivalent of having a traumatic spinal injury. So then, what about the lesions in my brain? What about the new lesions forming? Were they the equivalent of a traumatic brain injury? From a young age, I was so worried about the possibility of being paraplegic and then quadriplegic. I never put a thought to brain lesions and the possibility of them changing my personality and who I am at the core.

The National MS Society’s defines depression as a term commonly applied to a wide variety of emotional states ranging from feeling down for a few hours on a given day to severe clinical depression that may last for several months. Even that definition seems vague.

In one scholarly journal, it was stated as many as 50% of people with multiple sclerosis will experience “clinical depression” and severe mood changes that may lead to suicidal thoughts in the course of their MS. I’ve been writing about our disease for ten years and I found that number low; much lower than the National MS Society and other MS orgs. But that may be because “clinical depression” is just one biological type of depression. You have to think of depression as a spectrum. Typically, the “clinical” type is considered the most severe; the kind the patients report as robbing them from any quality of life. It is severe. It’s very different from what we call “situational depression”.

This article spoke of clinical depression caused by MS, specifically. I started getting lost in the science and the fear took over for a little bit. So, I sat back and let my eyes rest on the abstract. The hope in the article struck me and soon the horrible scientific terms fell away. What I got from it was this: it is treatable. Knowing the signs, having a sense of self-awareness, and knowing when to tell someone you trust and to tell your doctor, is crucial. The researchers also noted that in the US we need more awareness of suicidal tendencies in clinical depressives as a result of MS. That only made me feel more strongly about writing this article. Living Like You doesn’t always mean living a bump free life. It means you trust that you can overcome such obstacles.

I knew what to do when my mood went from happy to severely depressed. I knew who to tell. I knew not to trust my thoughts. Know your loved ones, keep them close. Recognize when you can’t trust your thoughts. Are they the opposite of what you typically would think or leading you to do the opposite of what you’d normally do when reacting to a situation? Trust someone you love and trust your doctor.

It is normal to experience depression during the course of your MS, and it is treatable between things like medication and mindful therapy.

Have you noticed a change in your personality as you’ve progressed with MS? Do you have a support system and a protocol if you realize you are slipping into a depression, a time when you realize you aren’t yourself and need help? I did. And I am doing great. Remember that!