Being an Independent Woman Means Something Different With MS

I recently had an experience that made me face an enormous fear that I have – being DEPENDENT. 

I am not sure I had fully realized just how much this fear weighs on me.  But once I realized it, the feelings just came flooding out.  So be prepared because I’m about to bare my soul.  

Part of the human condition is to want to advance in life.  We naturally move through different stages of life and discover new parts of ourselves which inform our careers and the lives we lead.  While this is a natural experience for almost all people, we have an added nuance of individuality in our society.  Western culture is an individualistic culture, rather than a collectivistic one.  I find this a fascinating subject but for our purposes, I will briefly point out that a collectivistic culture emphasizes what is best for the group as a whole, while our culture focuses on what is best for the individual and it is our personal achievements that are emphasized.  I bring this up because it impacts each and every one of us in this society, not just me.  We are infiltrated by a push to be independent and as a result, many of us feel this desire and need to personally embody the concept of independence.  

So for me, part of this fear of being dependent is probably “normal.”  But there is a large part that is a direct result of having MS.  I have a really tough time asking for help and yet, I have to ask for it more than most people do.  I know everyone has something that they need assistance with, trust me I don’t think I’m that unique.  But when I look back over my life I realize that I have needed to rely on others a lot.  Maybe sometimes it was helping me with laundry or when I was younger for example it was keeping track of doctors appointments.  And these are little things.  There have been times in my life when I could not get myself from my bed to the bathroom and had to have someone shower me.  Thank G-d that those moments were short lived, really, thank G-d.  But nonetheless, they instill a sense of fear in me that I might experience any of those circumstances again one day.  

The flip side to this coin is that we all yearn for someone who will take care of us one day.  We want to find a partner who will see us through thick and thin, which I talked about last week.  When you think about it, it’s sort of ironic.  I want to be as independent as possible the rest of my life, and yet, I want to find someone who will take care of me in case I am ever dependent…even if the dependence only lasts a few days.

I didn’t realize it before, but I think this fear is something I carry at all times.  It’s tucked far away – which is good.  I need to be able to interact with others, especially potential dating partners, in a healthy and balanced way, and not from the perspective of “I’m terrified, please take care of me!”  I also think I’d be an emotional mess if I was aware of this fear at all times.  So I’m glad it’s buried deep within.  But I can’t deny it’s existence…it is very much there.

Living with MS brings such an intense sense of uncertainty that I have no idea what tomorrow will hold.  That is a truth that applies to each and every one of us, but those of us with a chronic illness like MS, actually see that as their reality while many of us prefer to ignore it.  Now that I’ve moved out of my parents house and am becoming an ‘independent’ adult, I think the fear of being sick without anyone around to help has intensified.  

I don’t think it’s a rational fear necessarily.  My family and friends would be by myside in a moment’s notice if I needed anything.  I know that without a doubt, and have the evidence to back it up.  And yet the fear is still there.  Can I really be an independent adult like my peers who don’t have an illness?  And, if there is a time when the answer to that is “no”, will there be someone there to take care of me and help me through it?  Who will help me… without making me think too much about that word I hate – “dependent”?

This fear truly lives deep within me.  I might be writing this eloquently but I’m crying on the other side of the screen.  Sure, I’ve already processed this feeling and have come to a very calm understanding of it.  Yet, I’m still emotional writing this because just acknowledging the existence of this raw emotion that has taken hold with my diagnosis is, well, painful.

I think many of us with illnesses experience this fear in a way that is different from our healthy peers.  Once I realized I was experiencing this feeling, I actually decided to talk it over with my mom, who, over the years, has been an incredible cheerleader, caregiver, and student of my life with this illness.  She pointed out something amazing which has given me so much strength in facing this emotion.  She acknowledged that I finished three degrees, despite being told I would never get the chance; I work full time; and I did move out and pay my own bills now. 

She didn’t sugar coat anything just to ease my fears.  She was honest in saying that, even with this level of independence, when I still need the help, I say so and my family has been there for me.  But she pointed out that the things I do ask for help with sometimes (or shall I say ‘the things she pushes to help with’ since I’m still working on asking for help) are usually minor, like laundry from time to time, or helping me on infusion day.  The most helpful part of what she explained was that those forms of assistance do not diminish my overall sense of independence.  I am still the independent woman I worked my butt off to become.

While the fear of being dependent will probably always remain to a certain extent, I felt so much better after talking to her.  I have achieved independence.  I am not measured in the way everyone else is so if I got the majority down right and it makes me feel independent then that’s what matters.  And, I am in fact very blessed to have a wonderful support system around me when I do need something from time to time.  My mom also encouraged me to enjoy every moment of this independence because of my fear that it might not always exist, which helped ease the pain too.  

So there you go, I let you in on a fear that I did not even acknowledge fully until last week.  It’s important to me to always write candidly and share the true aspects of living with MS.  I would not trade these lessons for anything, but it is certainly a challenging journey!  

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