Life with MS

My Story: A Family’s Love

By Janet Yost
I was diagnosed with MS 18 years ago, and coincidentally, I also happen to have bipolar disorder. When I was diagnosed with MS, I was a successful public health nurse and happily married with a newborn daughter and three-year-old son. For the most part, I have managed my MS fairly well until four years ago when I experienced a flare-up, and I was given a treatment that affected me in a way no one expected. I was given high-dose IV steroids, and soon after completing the course of steroids, I began to experience delusional thoughts – specifically delusions of grandeur.
These thoughts began when I awoke one morning and believed that the staff of Publishers Clearinghouse and Extreme Home Makeover were coming to our home to shower my family and me with lavish gifts and lots of money. Also, I believed they were going to send us on a trip to Florida while they remodeled our entire home. Thinking these people were coming to our home, I bought lots of food to prepare a great meal for them, and I bought new clothes to wear in Florida.
I arrived home with all the food and new clothes and explained to my family about the guests I was expecting. They were dumbfounded, confused, and even frightened because I had never acted this way before. They wondered why I was acting this way now. They tried to convince me that no one was coming to our home, but I would not believe them.
Trying to find an explanation for my behavior, my husband contacted the psychiatrist who treats my bipolar disorder. The psychiatrist explained that the delusional thoughts and behaviors I was experiencing could have been related to the steroids I was given.
After hearing the psychiatrist’s explanation, my family was relieved to know that there was a medical reason for what I was experiencing. However, as hard as my family tried to convince me that my grandiose thoughts were caused by a medical condition and were not real, I refused to believe them. The most difficult time for me was at night when I realized no one was coming to our home that day. Instead of feeling foolish for thinking that such things were going to happen, I went to bed sobbing. I was also angry at God, because I believed He had spoken to me directly and told me these things were going to happen.
Seeing me so distraught and being unable to convince me that my delusions were just that, my family took me to our local hospital and I was admitted to their psychiatric unit. At first, I believed that I was being admitted so that plans could be made for a great party for me when I was discharged.

Of course, when my family took me home upon my discharge, there was no party. Life for me at home was just the way it was before I became ill – with no expensive gifts, no showers of money, no trips, no parties, no visits from famous people. I could no longer work because of my illness. Accepting this reality was a great blow to me, and it took quite some time for me to abandon my delusional thoughts.
Throughout this period of adjustment, my husband and children were very supportive of me, and they reassured me that my behavior during my illness was just that, behavior caused by an illness over which I had no control.

Although I heard their words of support, encouragement, and understanding, the shame and embarrassment I felt about the way I acted while I was ill were overwhelming to me. Knowing how I affected my family by purchasing the items I did, crying as hard as I cried when things didn’t happen as I expected, and even having my family need to look for me when I ventured out looking for the famous people I expected to come to our home, was almost too much for me to bear at times. It was my family’s – even extended family’s – loving support and encouragement that eventually allowed me to forgive myself for my behavior and my actions.
If anyone has experienced any type of delusional behavior that may have been related to treatment with steroids or any other medication, my hope is that we may be able to assure them that they are not alone in their experience, as fearful and distressing as it may be or may have been. I realize that, in many cases, medications such as steroids are needed to treat MS symptoms. However, I want to stress the importance of patients and practitioners discussing all the possible side effects of medications such as steroids. These discussions are incredibly important when mental health diagnoses are involved, and especially if unusual behavioral symptoms occur once a medication has been started, or even after its course has been completed.
Fortunately, I have now returned to “myself” and have resumed my role as mother of our household. I cannot thank my family enough for their roles as “mother” to me, and for the love, strength, determination, resilience, and persistence they showed to me when they needed to be the “moms” in my life. My family and I can agree with the phrase, “undergoing adversity can make one stronger.” We believe this is true for us!