That word. Those words. Multiple Sclerosis. Diagnosis. I can’t understand what is happening, or why it’s happening. “But I’m so young. But it’s not fair”. I guess it’s too late for those now.
“What will I do? Will I be able to walk next year?” That is what floods my mind, as I walk down the hall from the office after I rose slowly from the chair. Sitting in the hospital, getting steroids again, I can’t help but think about how annoyed I am. I had a life, I had things to do, I don’t have time for this. I guess it’s too late for that now.
I haven’t said very much lately, I guess I haven’t had very much to say. I haven’t seen very many people lately, I guess there aren’t very many people to see. I haven’t smiled that often recently, I guess I don’t have anything to smile about. I guess it’s too late for all of that now.
Not only does Multiple Sclerosis have an affect physically, it takes a toll emotionally as well. As soon as you’re diagnosed or the idea of being diagnosed is brought up in discussions with doctors, there are very real and powerful feelings that are usually brought to the surface. Also, throughout the course of the disease there are many emotional changes that can occur due to damage in the central nervous system.
Everyone will react to their diagnosis, or thought of diagnosis, differently. Some common feelings that individuals might feel upon diagnosis are shock, denial, confusion, anger, anxiety, or relief. Being in a state of shock is a common and understandable first reaction to being diagnosed with MS. It is also common for people to be in denial and to try to avoid the feelings associated with being diagnosed. It’s OK to have these feelings. It’s normal to have these feelings. Confusion and anger seem to go hand-in-hand, they both come from a place of not knowing. Not knowing why this happened to you. Unfortunately, no one is really going to ever figure that out. Anxiety comes when you start thinking about what’s next, what’s in store for your future. And to feel relief when diagnosed? I know some that have. Often after years of experiencing symptoms and not being able to put a name to it, finally it has a name, and now with the name a course of treatment.
But what about the emotional changes that happen after diagnosis? Once we have reconciled with ourselves that this is our ‘new normal’, what can happen then? Unfortunately, as it is with many symptoms, emotional changes are very common. These changes can include anxiety, mood swings, stress, depression and pseudo-bulbar affect, to name a few.
- Anxiety: anxiety is a very common emotional symptom. Feelings of anxiety can stem from uncertainty with the future, to thinking about medical expenses, to thinking about how your other symptoms impact your current life.
- Mood swings: this is the most common emotional side effects that can happen with MS. Mood swings can present as moodiness, crankiness, anger or irritability. They can happen at anytime and can come out of nowhere.
- Stress: feeling stressed out is extremely common when having MS. Considering every day can bring a new challenge, having varying degrees of stress at certain times is quite common. Chronic stress can we can the immune system and increase your risk for other illnesses. Research has been starting to show that stress can impact relapses as well. Finding stress reduction techniques that help for you, that you can do daily, can be incredibly important in how you manage MS.
- Depression: major depression is also very common in people with MS. Surveys and research have showed that more than 50% of people with MS will struggle with major depression at one point in their life time. Since depression can put individuals at risk for doing harm to themselves, knowing the signs of major depression is important.
- Pseudo-bulbar affect: this is a rare type of emotional response but can still happen in individuals with MS. This occurs when individuals experience periods of uncontrollable crying or laughter, without a stimulus to elicit such a reaction. This reaction occurs due to damage in the pre-frontal cortex of the brain and is present for every 1 out of 10 people with MS.
The emotions that an individual is experiencing will dictate the treatment needed. Usually lifestyle modifications and therapy are the most helpful interventions.
I have certainly struggled with my fair share of stressors and negative feelings stemming from MS. When I was first diagnosed I struggled considerably with anger. I was frustrated and mad that this happened to me. Anything that reminded me of having MS would put me in a negative mood. It took me many years to come to terms with my diagnosis, and creating LissMS was one of the things that help me to shift my perspective on my disease. Creating positive things from a negative one is a powerful way to shift our perspective and outlook. What is something that you can do that will shift your thought process about your diagnosis?