Not All Snowflakes are the Same
So I recently decided to make the switch from Tysabri to Lemtrada. I did not talk too much about it on my own blog because A) I just have not been on top of it due to me not feeling well and B) I didn’t know enough about Lemtrada and how it works to be able to talk about it without spreading misinformation. So I mentioned it very casually. As a blogger I am used to writing an article and hearing all sorts of opinions either “on my side” or “against it”. I am more than OK with people disagreeing with me, in fact, I like it because it lets me try to see things from another perspective. Life would be boring if everyone agreed with me right? Anyway, as I said, I mentioned it pretty casually as I had not formed my own opinion yet and did not really want to start a conversation about it. This is where it got weird.
Usually I post a blog entry and I start seeing comment alerts in my personal e-mail. I got a lot of support but didn’t see many negative posts which is what I expected. What I did NOT expect was to start seeing e-mails from random people pour in attacking Lemtrada and my decision to switch to it. Though these e-mails were clearly an attempt to get a reaction out of me I was not annoyed so much as I was curious. Why were people going out of their way to send me a personal email voicing their opinion or simply trying to be a jerk? It was like there was a community of people on a mission to go around and attack anyone starting Lemtrada. Why? Did they know something I did not? Not knowing bugged me so I started learning everything I could about this medication.
I learned a lot about the drug and it became clear to me (very quickly) why people were saying the things they were saying. “I have never heard of someone being so happy to start chemo” was one of my favorites. You see most of these people were acting like it was a conventional cancer chemo therapy which it is not but that is not what I want to get into because I thought to myself “what if it is? So what? This is my health, my body and my decision. Nothing else is working to calm my disease down and I am willing to do anything to see straight again” so why does anyone care? Should we not be supportive in each other’s decisions to treat our MS? We all want the same thing, to feel better, so why try to keep someone from achieving that?
MS is often referred to as a “snowflake disease” because we are all different. We all have a different set of symptoms, a different rate of progression and we all respond differently to medication. If something works great for you than awesome! But just because it works for you does not mean it will work for me and vice versa. I wish a different therapy with fewer risks worked for me but for what ever reason they don’t so I have to move to “the heavy guns” if that is how you want to look at it. Think of it like this; maybe your fire can be put out with a glass of water (that is great, I envy that) but guess what? Just because that glass of water works to put out your fire does not mean it is going to do anything for a grease fire, that needs a different solution. I by no means am trying to belittle anyone’s situation and say some of us have it worse than others because everyone’s situation is different and pain/suffering is relevant to the individual. I am simply saying that there are different types of fire (just like there are different types of MS) that require different fire fighting techniques to control.
So if we all want to feel better why would anyone care what form of treatment I am trying? I have tried everything else and nothing is working. Sure you could look at something such as Lemtrada as being more risky but you have to think that some people have reached a point where living with the symptoms we have is just unbearable. I would rather live with the treatable side effects of a medication than the untreatable symptoms of MS. Not everyone feels the same and there is nothing wrong with that but me? I don’t want to live like this so I am just trying the next thing on the list. I am not saying “it is the right thing for MS” so why do some people feel the need to say “it is the wrong thing” when they don’t even know how the drug works or how some of us feel when we wake up and go to bed every day? It is sad. People hear the word “chemo”, blow it way out of proportion, run with it and spread rumors like they are in high school. All medication have risks and yes, Lemtrada may have higher risks but you have to take risks in life in order to see possible benefits. Nothing changes unless you do something to change things.
Do you celebrate your MS Anniversary?