About a year after my diagnosis, my mental health began to decline. Aside from the daily pain of my MS symptoms, I was also going through the emotional pain of loss. Loss of self and the loss of fight. My doctors didn’t discuss this part of the disease with me. I suppose it doesn’t happen the same for everyone. Yet, for me it started with GUILT.
The mom guilt overwhelmed me as my daughters, 5 and 9, watched me deal with pain, weakness and fatigue. Before my symptoms, I managed our home, was active in my girls’ lives, and worked part-time. Now, I struggled too just get them to and from school. And working was out of the question.
Some days it was tough to get out of bed. Other days I’d just cry from the pain or from the guilt I was feeling. No matter how hard I tried to fight the disease, it would consistently win, adding another symptom or taking my ability to live life on my terms away. My confidence weakened, and the guilt took a strong hold over me.
In addition to the mom guilt, I was also feeling like a burden to my husband. He was working over 50 hours a week, trying to build his career. Things at home began to pile up, including laundry, groceries, cleaning, and cooking; these tasks now fell to him. Not to mention emotionally trying to support our 2 daughters. As I saw it, I was failing as both a mom and a wife, and the disease was winning.
In the beginning stages, I was prescribed Copaxone injections to stop disease progression. For my ongoing symptoms my neurologist prescribed various medications. He put me on Gabapentin, Tramadol, Adderall, and Cymbalta. Taking all of these medications seemed outrageous. And proved to be detrimental to my overall health. Yet I would have done anything to get my life back. I wanted the pain, weakness, brain fog and fatigue to go away. I didn’t want to be a burden to my loved ones anymore. Only, my MS continued to progress, seemingly unaffected by the treatment.
After a year and a half, I started to experience leg weakness and pain that just wouldn’t subside, a constant reminder of my struggle. At 43 years old, I began to contemplate life in a wheelchair and was devastated by the thought of losing my independence and the ability to care for my loved ones. My inner strength began to weaken, and some days I just wanted to give up completely, overwhelmed with despair. I didn’t want this for my family; it pained me to think of them witnessing my decline. I didn’t want them to watch me slowly deteriorate to the point that I was unrecognizable, both physically and emotionally. I continued to put on a brave face for my girls and husband, masking my pain with smiles and laughter. Smiling through the pain started to be my new normal, my deceptive armor against the realities I faced. I was silently struggling, lost in a world that seemed increasingly dark and isolating. Pushing myself day after day, rather than listening to my body and giving myself the grace to rest, was wrong and only added to my burdens. Beating myself up for not measuring up to the woman I once was would take its toll. It left me in a state of constant guilt and frustration. I lived in denial for a long time, refusing to accept the changes in my body and the need for help, still hoping that one day I could reclaim my former self and the life I cherished.
Looking back, I realize I should have prioritized my mental health along with my physical health, recognizing that they are intrinsically linked. Seeking support and understanding instead of trying to carry the weight of it all alone was crucial for my well-being, yet I often resisted that idea out of fear of judgment. I often felt overwhelmed, trapped in a vicious cycle of anxiety and self-doubt that seemed never-ending, a storm of negative thoughts swirling around me. It ate away at my well-being, making it increasingly difficult to find joy in daily activities I once loved, working or spending time with friends. Even simple tasks felt monumental, and social interactions became a source of dread rather than pleasure, where I constantly worried about how I might be perceived by others. This low point would continue for three more long years, during which time I often felt isolated and misunderstood, as if there were an invisible barrier between me and the world around me. I learned the hard way that neglecting my emotional needs only compounded my challenges, creating a barrier that kept me from experiencing life fully and authentically. It took time, reflection, and a lot of self-compassion, but eventually, I recognized the importance of asking for help and fostering a healthier mindset, understanding that it was okay to lean on others. This realization became a turning point in my journey toward healing and self-acceptance, allowing me to slowly rebuild my life with renewed strength and hope, ultimately recognizing that prioritizing my mental health was not a weakness but a vital aspect of my overall well-being.
The takeaway, seek a mental health professional to help you navigate this disease. Build yourself a team of qualified healthcare professionals to help you. Having MS doesn’t have to define you.
https://www.nationalmssociety.org/understanding-ms/what-is-ms
Resilience in MS 
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