Everyone Is Affected by Illness | Multiple Sclerosis Blog

I was sitting in my living room in Los Angeles last week with my flatmate Charlotte* and our friend Elran*.  As they were asking about my blog and Sanguine’s work we got on the topic of illness.  Suddenly we realized that all three of us are personally affected by disease.  While each of our illnesses manifests in completely different ways and the severity of illness we live with varies, Elran and I both deal with our immune systems attacking our own bodies.  Let me tell you, no matter how severe or mild your symptoms are, knowing your body is attacking itself is never a good feeling.  And Charlotte had to deal with a dangerous outside invader to her body, which would trigger fears and a feeling of vulnerability for anybody.

This casual conversation with friends one evening after work got my wheels turning…how many of us are affected by illness?  There are over 80 autoimmune diseases, which honestly sounds like a low estimate to me.  And I only know about autoimmune because of my own diagnosis, there are other disease categories too of course.  Once Charlotte and Elran started sharing about their own experiences, I began thinking about all of my friends and family.  I actually had a difficult time thinking of people in my life who are free of illness.  I do not even know how to define “healthy” at this point.  I sincerely wonder if anyone reading this does not have someone close to them who has an illness – whether it be chronic illness, fatal illness, severe or chronic infectious disease, or even a mental illness.

I remember being a little girl and always being at the center of attention because of my diagnosis.  I had special attention in Physical Education during middle school, and I basically had free reign in high school to come and go as I pleased in order to do what was best for my health.  Teachers checked in with me before or after class, and my classmates all knew I had extra help with notetakers and extended time on exams.  Beyond that I was a “news story.”  I was in the paper or on the news fairly often because of my age and more importantly because what I was doing to raise money in the fight against MS.  Of course not every person with a diagnosis is going to become a leader for the cause or an advocate for other patients.  Each person is different.  But there was something about me and my experience that made it seem like I was incredibly unique.  Maybe the only thing that made me unique was that I shared my story…

As I’ve gotten older I’ve realized that EVERYONE has a story.  I meet people ever day with a story, which usually unfolds after I disclose my diagnosis.  And, looking back to my childhood, it is unbelievable how many people in my close circle of friends are now impacted by illness either personally or with a family member.

Surprisingly, despite how many of us are impacted by illness, our society still has serious stigma about illness.  Many of us keep quiet about our diseases, or even our partner’s disease.  I cannot even tell you the number of people who have confided this secret with me…you’d be surprised how many people are standing right next to you, looking completely “normal,” but under the surface are facing a long list of symptoms and have to manage medications.

Sounds fairly isolating right?  What amazes me is that sometimes we feel so isolated and if we just opened up about it, confided in one or two people, we might find that more people understand than we may realize.  If we got a perfect score of three for three when illness casually came up in my living room, then I wouldn’t be surprised if other circles of friends might make a similar discovery.  The most important part is that Charlotte and Elran go through their lives like nothing is wrong, or like nothing ever happened.  Charlotte doesn’t have to deal with symptoms anymore, thank G-d.  Due to the nature of her diagnosis, it was a one time occurrence of symptoms.  But someone facing a diagnosis right now might be able to gain great support from someone like Charlotte who can relate to the feelings that came with the experience.  And Elran goes through his day to day as a successful young professional while consistently managing his symptoms.  No one would know that anything is wrong.  Charlotte and I are both pretty close to him and we didn’t even know about this part of his life until last week.

Everyone has a right to privacy and needs to do what’s best for them.  Often, what motivates us to keep quiet is the stigma in our society and the risk of losing a job or health insurance.  Lately I’ve been wondering, if so many of us are affected by illness, and we are the players in this society…then isn’t it up to us to change this?  What if all of us were open about this part of our lives?  The best way to reduce stigma and prejudice is to have personal interaction with “the other.”  What if us “others”, which could easily be the majority of society, gave people the opportunity to reduce their stigma?  Could we be the gatekeepers to our own sense of ‘safety’?  Do we, the patients, hold the key to reducing stigma in our society?

*Charlotte & Elran provided permission to use their names in this blog.