What Other People Think of You Is None of Your Business

My parents did a great job, cultivating my self esteem, making me feel that the world was my oyster, and I I could accomplish anything I put my mind to. It was truly a gift and honestly, I did not have any delusions of grandeur, my parents had them for me.

I had a healthy sense of myself, not that of conceit, just self assured, comfortable in my own skin. I was taught to always try my best, to lead never follow and to infuse kindness and compassion into my actions. My parents were truly remarkable folks, individually and as a couple. My father had one of those academic intellects that naturally absorbed information, a learning sponge. He skipped three grades, went to the esteemed Stuyvesant High School and was the first in his family to acquire a college degree followed by JD earned from Brooklyn Law School. My mother, a different kind of smarts, still summa cum laude when she graduated from college the same June the I graduated High School. My Mom was truly free spirit, an artist to the core and purveyor of unconditional love.

I basically maintained a strong sense of my self until my MS diagnosis, so at 31 years old, I lost my sense of self and self esteem….....I really had a good run! Once I heard that I had Multiple Sclerosis, I sort of lost my footing, and I felt that my identity, how I saw myself in this world was lost. I was so concerned about sharing my diagnosis, especially with new friends or my children for that matter because I was afraid of how I would be perceived. Once saddled with my MS diagnosis, I felt like damaged goods and as a result, my self worth and self esteem took a pretty powerful right hook! For a long time my identity became tangled with my vocation, so when I was a Hospital Administrator, type A rising star executive, I felt valued, like the self esteem I held was valid. When I became pregnant, I had been living with the knowledge that I had MS for less than a year and then had three children within a little over 4 years and by my 5th Wedding Anniversary I had three children 4 and under. My identity as a wife, then mother was mired by my diagnosis as I did not have the time or where with all to fully integrate this Dis-Ease that took up residence in my Central Nervous System.

I know that the trauma of my diagnosis left me unwell in my mind for years. Immediately after hearing my diagnosis, my sense of self was shattered. I tried to spare my children the worry of having a “sick” Mom, inflicted with Multiple Sclerosis, that crazy esoteric disease for which the cause is unknown and there is no cure. I did not want them to worry about me, and I held my diagnosis tight to the vest . I did not want to be that “sick” mother that everyone at the PTA whispers about when she walks into the meeting because she is “sick” and I did not want pity. I wanted to not have MS or my diagnosis tied to my name, part of my identity.

We become vested in how we present to the world, and I did not want to be perceived as weak, sick or pathetic, especially not with MS, the one disease that is horribly misunderstood because it truly is such an odd disease, an enigma,affecting and presenting in each of us differently. MS has garnered much attention recently, maybe because the numbers of people being diagnosed with MS has increased exponentially in recent years and pharmaceutical companies have been barraging us with TV and Prints adds as they bring their disease modifying drugs to market, while many celebrities have gone Public with their MS diagnosis, with a special thank you to social media for amplifying all of this. The general public world wide is learning about Multiple Sclerosis as it has been seeping into the world population at an alarming rate…at least in my opinion. I’ve mentioned in my writings that I had an Aunt and first cousin, the younger of her two daughters, who had MS, and who were sick, disabled, estranged…. and I could go on to paint the picture, but I assure you that it was not pretty, no not at all.

As a holder of a chronic illness, one that can disable you and do a number of very strange, painful, and many invisible things to you, I can admit that it is hard to maintain your faculties, it can be overwhelming, at least it was for me. Instead of handling my diagnosis with compassion and grace for myself, I tried to hide my diagnosis, so that you would not know I had MS, therefore there would be no judgement, no pity, no shame. Yes shame, how could I have felt shame? I can not explain it, but I was ashamed and embarrassed, as if I had control over this fate, as if I had done something to put myself in this situation. I realize that my sense of self was shattered by my diagnosis, and that all the self esteem I had grown and cultivated into my adulthood vanished. I needed to find a mechanism to regain my identity and sense of self so that I could reclaim the self esteem I had learned to manifest and enjoy. It would take me a long time and a massive amount of work to accomplish my self esteem take back!

I truly never let others dictate or influence how I felt about myself, and somehow I just relinquished my self worth and understanding of my self when I heard MS. I had to relearn that “what other people think of you is none of your business.” I never was concerned about how others perceived me, I always tried to be the best version of myself, to treat others how I wanted to be treated, I really lived by the golden rule. How was I to relearn confidence, self worth and self-esteem? The key for me was to accept what was before me, let go of the shame and to share my experience with others who were dealing with this disease. I became educated and I studied, pursuing any avenue that could help me firmly get an understanding of what I was dealing with. I stayed open to any and all ideas, theories, treatments and research that involved MS. Knowledge is power and I accumulated experiential knowledge, all the while studying anything I could get my hands on. I began to trust my intuition and I developed a sense of knowing, of expertise. Seriously, I did not want this disease to be where my expertise lies, but the fact is….it is!

Once I had a clear understanding of what I was dealing with, and the knowledge that with regard to Multiple Sclerosis, there are many unknowns, accepting this fact is a tough pill to swallow. If we don’t know what causes it, how can we cure it? It might cripple you, it might not, you might deal with cognitive issues, you might not, you could have vision problems or not…and so on and so on. One can go down a rabbit whole with all the could be, but might not. Studying and then sharing my knowledge about MS, supporting others newly diagnosed or living with MS has helped me rebuild my sense of self, and has restored my self esteem. So I would say that two factors, knowledge and my wanting to share what I know have made me look kindly upon myself. I understand how fragile self esteem and self worth can be, and I learned to have compassion for myself, to give myself grace and to recognize that I can influence my own self worth, and that my concern about others perception did a disservice to me, myself and I. I have learned that my Multiple Sclerosis diagnosis took a boatload of things from me, but it gave me a unique perspective and appreciation of my own well being, and I must confess, that even though I am currently not ambulatory, confined to a wheelchair, I am well and still learning, but most importantly I am thriving. Holding oneself dear, being kind and compassionate need to be a priority, as they are the building blocks needed to restore my sense of self and self esteem.

With so much love and then just a little more,

Stephanie