These Are The Things MS Has Forced Me To Think About…

January 24^th will be 12 years since I woke up and lost vision in my right eye. 12 years since people began taking my complaints seriously. 12 years of proof that I have this disease. 12 years of dis-ease.

12 years that I cannot downward dog my way out of.

I have a reached a new level of acceptance; a new realization on this path in my own version of Multiple Sclerosis. I have finally worked to be able to voice these thoughts out loud (and now on paper) for what feels like the first time. For the majority of those twelve years when asked how I am, or how I feel, I minimize, or disregard completely, how I genuinely am. For the sake of others’ comfort, I will say “oh fine,” or “I am ok,” sometimes I even say “good,” just so I don’t have to see the confusion, the sadness or the uneasiness on their faces. I believe this is ok to an extent, this is a coping skill I use and oftentimes it is my saving grace. 100% of my day is spent thinking about, managing and accommodating my illness; in these moments I don’t have to talk about it. But I have made an error in doing so for so long.

I have created a world in which I live that does not allow me to experience, express, or manage how I genuinely feel. This realm that I am existing in is just that, existence. Existence so that others feel better. And this existence has led me to struggle with identifying what is actually happening inside my body and my brain.

When it comes down to it, no, I am not okay. I am not okay in the sense that you are okay; in the sense that you function throughout the day to day without having to stop and think about every…single…move you make, or every…single…decision…you are faced with. Everything I eat impacts me, every pair of pants I choose to wear has consequences. The amount of time I sleep, the amount of water I drink, the social activities I engage in, even the work I do; all of these things effect how I feel minute by minute, hour by hour. I am slowly learning how to live the best way for me; but in doing so I am facing some realities I have not given myself permission myself to accept and truly experience for the last 12 years.

This past weekend I spent time with five beyond amazing humans (seriously, every person I have met because of Michael has been so so so wonderful). We enjoyed another city, in fact, another country, we ate such good food, and we experienced great music (minus being trapped under a smelly parachute).  But, it was in these three days that I became so acutely aware of all the things I have to do to survive in a “healthy bodied” society. I noticed every quirk I have and all the irrational anxieties that flood my thoughts day in and day out. I also observed that these perceived quirks and irrationalities are due to my chronic illness; these behaviors and thoughts are due to not feeling well 97% of the time and that other people (most often than not) do not know this, or are unable to empathize with this.

I am challenging myself to discuss this more with those around me; with those I feel safe with. Yes, yes I write a blog all about it; but, as terrifying as it is to share with the internet all of my thoughts and feelings, it is even more frightening to be face to face with someone and have to be vulnerable. More recently when people ask how I am, I have been saying “okay,” instead of “good,” as a way to ease into this new communication. Because while I am not the typical definition of good, I can promise you I am not bad, I am not unwell (unless of course it’s a bad day in which case I will probably be home and not providing the chance for anybody to ask how I am doing).

This acceptance I am facing will hopefully lead me to more answers, more coping skills and more ways to manage my MS. For example; I recently saw my neurologist and I believe that because I have been “good” for so long, he is being dismissive of my new complaints and concerns. That because I don’t look like I am struggling, and most of my symptoms are sensational versus functional, he is minimizing the new challenges I do face as my life evolves as it should. I am noticing more that when I do put myself out there and attempt to explain how I am feeling, others also minimize this, trying to rationalize how I am feeling or explain it away with simpler, more temporary ailments.

None of this is helpful for myself and for those close to me who bear the brunt of my frustrations (I say it all the time, and I’ll say it again, Michael is a saint). I feel alone and isolated, simply due to the fact that it is hard to express and share my world with MS, and that most people do not understand. And when I say understand I mean fully comprehend this life; empathy is huge and 99% of the people in my life empathize and support and care for me and I would hope they don’t feel all the gratitude I have for them. But so far, MS in my late 20s, and whole month and a half into my 30s, has been very different than the MS I had 12 years ago.

MS in my 30s will involve me asking for help, communicating more clearly, and advocating for more answers. MS after the last 12 years will be my continued learning and adjusting, my managing and accommodating; but, also a lack of shame, an increase in self-respect and more hope that I can feel well day to day, while I openly share my quirks and anxieties.