It is not fun being part of a club you never wanted to join. Now, imagine this club is not located in an area with lots of roads and public transportation. This special club where you are a new member is located way out in the boondocks with a few roads that are poorly lit. Welcome to the rare disease world.
For me, multiple sclerosis (MS) made me a member of that club and I am going to share my advice with new members.
I did not have any warning when I was diagnosed with MS. I was not someone who went back and forth to medical professionals, so there were no clues that anything was wrong. As I sat on the exam table in the emergency room, I decided to heed the advice of the physician who delivered the life-changing news. I picked up my phone and looked up MS. Thanks to the doctor, I was aware that I was not going to die. That was the first thing I understood. The rest of it was a mystery that I thought would unfold after I did my Google search. It was then that I thought I would find the ultimate answers to my questions.
Instead, I learned that the new “friend” along on my life’s journey was a mystery.
What I learned about MS that afternoon was a shock. This was not only a chronic illness but a rare disease. MS is an illness that affects a small percentage of the population. According to the National MS Society, the disease affects nearly 1 million people in the US population. It translates to under 1% of the world’s population on a global scale.
Suddenly, I was a person living with a currently incurable chronic illness, plus I was a member of the rare disease club to boot. This means that, compared with other diseases, I would have access to fewer clinical studies and other forms of research. Information about MS tends to be repeated on various websites. I was subject to lots of conjecture from those living with the illness. Reliable data was available. It was simply difficult to curate.
Sorting through the available information was difficult. My mode of thinking at that time was that more was better. More in terms of time and more in terms of gathered data. I started swimming in pinned websites and article notifications.
While there was not as much information about MS as with other less rare diseases, there was some. The trick was figuring out what was good and what was not. I knew that there were things that could help me live a fuller, more productive life while living with a rare disease. It was now my job to find the gems that would help me chart the course of my MS journey.
Read more about HCP resources for MS
Now my advice. The so-called wisdom I have to share is not one that will automatically change the lives of people living with a rare disease. It will not cause a lightbulb to go off and for the clouds to part to the sounds of angels. What it will do is allow some MS patients to better advocate for themselves. It could save you time, pain, and confusion. My advice is focused on how to discern between good and poor information.
Here are my suggestions:
– Be suspicious. Be dubious. Be cynical. Learning that one has a rare disease is an earth-shattering experience. I cannot emphasize what it is like to feel like your body has betrayed you and that your life plans might be in jeopardy as well as your lifespan. It is a time when I felt most vulnerable and most open to answers that would make me happy. Do not fall into the bias trap by looking for the answers that you want. Be on guard as you start your information search. A well-designed website means nothing.
– Good, verified information can be found at .gov websites. These sites are run by the US government. No other company, organization, or person can use that designation. All of the information here is vetted and is my personal gold standard.
– Use Google wisely. The top websites are not necessarily the best resources to use. Established organizations will always be helpful sources of basic information. You may not agree with what is presented, but you can still use it as a place to start. Google Scholar is a great reference for peer-reviewed, scholarly articles. You do not have to be a scientist to understand some of them. You can read the abstract at the beginning. It is a summary of what the published article is about and is usually written in plain language.
– Avoid any blogs that do not reference where they are getting their medical information. Blogs are personal expressions that data may buttress. However, I like them for personal journeys or as a jumping-off place to do further research. Facts presented should point somewhere and help you to learn more. Living with MS puts the impetus on me to do extra research. The same probably holds true for those living with other rare diseases. We do not have a ton of information easily available.
My best piece of advice to the newly diagnosed: Do your research with care, a touch of skepticism, and open eyes.