Knowledge is Power; Being Your Own Advocate
“Knowledge is power”.
That is true in all aspects of life (if you ask me) but especially when you have been diagnosed with a chronic disease like Multiple Sclerosis.
“No one cares about your health as much as you do”.
OK you could make a really good argument against that one, I know, but what my point is, is that you have a vested interest in being healthy. Being able to function and enjoy life positively helps you more than it helps anyone else. You may have a crappy doctor, I know I have gone through more than I can count before finding my current neurologist who I feel is so good at what he does that I moved back from Colorado to California to be treated by him. But all those other doctors? The kind of doctors you have surely seen? You try to explain a symptom that is making your life miserable or how you just can’t get control of your disease and they basically shrug it off and walk away after the 10 minutes they allocated to your appointment. They (the crappy doctors) do not care, they just need to get through their list of patients for the day so they can get paid and go home. If you paid to have your house painted and the painters showed up, looked at your house and just got back in their car only to drive away after taking your money wouldn’t you feel ripped off? That is why many services are not paid for till after they are done so you can actually judge if they deserve to be paid based on the quality of their work. Why is healthcare not the same? Well that is an entirely separate issue. I want to talk about how to make the best of this situation that will probably never change.
YOU have MS, you will always have it (unless they find a cure some day) so don’t you think you should know as much as you can about MS? A lot of medical professionals will tell you (if you personally know them that is) that they were taught in school to never admit that they do not know something. As you probably know, neurologists tend to have “just a bit” of an ego. I know that I have noticed the less they seem to know about something the larger their ego is. The more defensive they are. It’s like they are thinking “I am a neurologist, how dare you question me” but if they really did have all the answers (which is impossible, really) like they pretend they do, they would not be offended when you ask them a question. People are only offended by something that is true…
Once I realized this I decided “I have MS, I am the one who has to live with this for the rest of my life, so I should know just as much (if not more) about MS as my doctors”. Now is that realistic? No. I have not gone to medical school but even so, I try to learn as much as I can. I don’t just sit there and read Wikipedia all day, no, since my mother is an Occupational Therapist I have access to all the books she used in medical school. I have bought my own and she has also added to her collection to further expand upon what she knows and how it may relate to MS. I also tend to read scholarly articles when doing research online. You could say I have an “unfair advantage” over most people but the goal is not to “know the most”, it is to know as much as you can know. That is what I would consider “being your own advocate”. To never stop trying to learn because as I first said, “knowledge is power”.
How so? Well let’s go back to the neurologist thing. I know just enough to tell whether they are full of it or not. When I moved to Colorado my neurologist (out there) told me I was JC positive and that I had to discontinue Tysabri. I told her this was not true, I did not have to stop, I knew dozens of people who are on Tysabri despite becoming JC positive, in fact, I know people who tested JC positive before they even started Tysabri! I knew the risks and I knew the actual odds of developing PML (a rare and potentially fatal brain disease). “Well it’s not the JC virus we are worried about, it’s something called "P M-" I cut her off Progressive Multifocal Leukoencephalopathy? Given that I have no history of immunosuppressive drug use and that I have been on Tysabri less than 2 years I have about a 1/1,000 chance of getting PML, I will take that risk.” I know I was rude but the conversation was much longer and she spent the whole time being incredibly condescending, which I do not in the least bit appreciate. She looked shocked that I knew that much and asked to be excused while she consulted with a colleague. She came back and told me we would continue my treatment. Had I not been educated on the matter I would have been forced to stop my treatment and most likely would have tanked. Yes, staying on Tysabri was a risk but that was my decision to make not hers. It was her job to educate me on the risks so I could make an informed decision on my own.
This is why you really have to be your own advocate because otherwise people will make decisions for you. Decisions that directly affect you! What if they put you on a treatment that they are simply trying to push for some sort of “personal gain” from pharmaceutical companies? A medication that may be total crap or have risks that you would not have to deal with on another medication? I do not like that idea and so, I always try to keep up to date with the world of MS. Even if you just read what you can on Google, Facebook, the MS Society’s website, blogs or articles here on Multiplesclerosis.net you are still educating yourself more than a lot of people do. You do not need a library of medical textbooks to be more informed than others, you just need to want to be more informed.
Have you ever experienced any of the following financial struggles due to your MS?