Have you ever read a comment on social media, and it just rubbed you the wrong way and felt the need to “set them straight?” Ok, maybe it’s just me but I recently went through this exact thing.  As most of my friends and family know, I have had to change the medication we are using to manage my Multiple Sclerosis and to say I have felt a whole array of emotions this last month would be an understatement.  First off, I was shocked that my body decided that something that has worked amazing for me for 12 years, is now threatening to destroy me.  I have been angry at the fact that apparently, I’m not in full control of what this disease is doing to me.  I have been scared that I won’t find anything else that my body responds to as well as my previous treatment. I’ve been nervous that I would have a serious relapse which has happened each time I had to take a break in my last medication for whatever reason.  I have been anxious to throw yet another medication in the mix.  And to top it all off, I generally feel yucky – I go back and forth with nausea, headaches, fatigue, and anxiety multiple times a day and I’m just not feeling like myself. I’m probably a tad short tempered too, but you didn’t hear that from me.    

That being said, my family are super supportive, compassionate and my biggest cheerleaders plus they recognize that there will be ups and downs particularly with this medication as it tries to reset my immune system by pushing my current immune system out the door. But, what I have come to realize is that I’m not really built with that kind of patience and empathy for myself so it’s a battle I am fighting internally to practice what I preach to others.

Alright, now to the person on social media that set me off.  I guess it wasn’t the day to rub me the wrong way.  I joined a page on FB for people on this new to me medication. I usually sit quietly (maybe not quietly) but I generally just read and learn from the experience of others.  This page has  pretty standard rules:

Be kind – Treat people the same way you’d treat them face to face and the way you’d like to be treated.

No Hate Speech or Bullying – Make sure everyone feels safe. Bullying of any kind isn’t allowed, and degrading comments about things like race, religion, culture, sexual orientation, gender or identity will not be tolerated.

No Promotions or Spam – Give more than you take to this group. Self-promotion, spam and irrelevant links aren’t allowed. This includes Go Fund Me or other fundraising links, even if they’re for charity.

Respect Everyone’s Privacy – Being part of this group requires mutual trust. Authentic, expressive discussions make groups great, but may also be sensitive and private. What’s shared in the group should stay in the group.

Help us by Reporting – Please help us by reporting posts that don’t follow the rules or that you don’t think belong in the group. PM if you aren’t sure about posting something.

Stay on Topic – This is a group for discussion about the drug Mavenclad, not a general MS group. Please stay on topic.

This all sounds pretty straight forward, easy to understand and even easier to follow…….. The funny thing is that my perception and your perception of the same thing can mean something totally different to each of us. I know that it happened occasionally when I was still working – sometimes there was an undertone to an email that was passive aggressive, undermining & condescending and depending on what was happening around me, what kind of day I was having and so on and so forth, it sometimes dictated how I interpreted that email. I also feel that social media allows a cloak of anonymity that we don’t have when dealing with someone face to face or even on the phone.  I’m not saying that people intentionally go out of their way to be demeaning or bullying (or maybe they do), but I think sometimes it just happens for whatever reason and most of the time, that reason is more about me than it is about the person writing the email. However, that being said – there are narcissists out there whose goal is to make you feel stupid, paranoid or like you are the one who is overreacting. 

I’m digressing – Some of the side effects of this medication are unpleasant particularly to someone like me who had virtually no issues with my last treatment medication. I also know that these won’t last forever, and the side effects may change one way or the other as my immune system starts to die off and begins to reset itself with healthier cells so there is definitely hope that this drug will be really beneficial in the long run.  I have faith that these speed bumps will be worth it after the completion of the 2-year treatment plan. After my initial 5 day treatment, I asked a question about nausea and wondering if anyone had suggestions (other than gravol) to tackle the nausea. All but 1 person had varying degrees of it and threw out some ideas and tips that worked (or didn’t work for them)….but that 1 person (isn’t there always 1 person who can just flip the script and turn your whole day upside down) made me feel like I was looking for sympathy and said that I needed to toughen up and that a little nausea wasn’t a big deal and that I was fine.  I tried to let it go, so I sat on the comment for a couple of hours and then felt the need to tell her that in my opinion her comment was condescending and a little judgemental and that I wasn’t looking for sympathy. Then she really let it fly on me. She told me she doesn’t coddle and that if she had that issue she would just put on her big girl pants and treat it and that she fares better when her supporters basically tell her to suck it up and do what needs to be done. She then told me she intends on beating her MS and that we (I) have to be tough and not treated with kid gloves. She knows first hand what it takes from you and she can’t dwell on all of her symptoms and if her telling me this made her a bad person so be it, at least she is honest.

I’m sorry, I just couldn’t.  It rubbed me the wrong way so I had to respond. I told her that since she values honesty, let me be honest with her. I told her I have had MS for a very long time and if you ask anyone who knows me if I analyze every little symptom I am confident they would say absolutely not.

I told her that I never said she was a terrible person, I was merely saying I felt judged for asking a question, and that I thought this page was a safe place to do that. And that it wasn’t necessarily what she said, it’s more how she said it and that kindness and empathy can go a long way.

I said that I too don’t like to be “coddled” so don’t take my question as wanting to be. That was the judgement I was talking about.  I told her that I wear my “big girl pants” every day and I definitely did not need a lecture on how to manage my disease. Which I can guarantee is the same way she manages hers. I finished by saying if her intention was to teach me that I should not ask stupid questions and should suck it up consider her comments a success.

We talked back and forth each of us being a little kinder with each comment and at the end of the day, we were able to find some common ground and more respect and compassion for each other. Am I proud that I let her get to me?  No.  Am I proud that we both came away from the exchange having learned a little more about each other and ourselves?  Yes. I came away knowing that I can always learn something – even particularly from someone who challenges me to look within and figure out how to turn a mountain back into a molehill.