Learning about MS
Some people knew someone with MS before they were diagnosed, while others knew nothing about MS at that point. When people talked about their diagnosis, they referenced how they learned about MS, how the diagnosis made them feel, and what sources of information they consulted.
Seeking Information about MS
Many people described how they learned about MS after they were diagnosed. Debbie remembers that the first thing she did was research as much as she could. As Liz and Jennifer recalled, information seeking could be a way of coping. Mia wanted information to make informed decisions, but acknowledged that sometimes “with MS, you don't get that. You just have to do the best with what you got.”
Other people didn’t look for information initially. Kelsey had a lot going on in her life at the time, and Debra N. tried not to read too much because she feels that she can be “kind of a hypochondriac.” Jason’s doctors told him to come to them with questions and not to Google it. Jerry searched online after Linda, his wife, was diagnosed. but remembers quitting because what he found was somewhat disturbing.
Dani didn’t want to go “too deep” in her internet searches.
Dani didn’t want to go “too deep” in her internet searches.
Sometimes you don't need to. Because what you find you may not be able to fully understand, which is usually the case. So, there is no use in me going too deep and trying to figure out if I'm going to die 10 years earlier than everyone because I have MS. Or just seeing all the bad things that could happen. I don't want to read about if I'm going to lose my bladder function. I can't-- I used to, and I used to write it down and cross-check, and do deep searches on weird places on the internet. But it's not helpful.
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So yeah, Google and I broke up, and it's been fine. Me and my email broke up. I know I literally have thousands, and it's from companies sending me try this and that. And I don't deal with it. And it's better that way.
Dina felt overwhelmed by information when she was diagnosed.
Dina felt overwhelmed by information when she was diagnosed.
And I just remember sitting at my desk and crying because I didn't know-- I was overwhelmed. Everything came with VHS tapes. So, I got a stack like this of boxes with info and pamphlets and information and videos, and all kinds of information that's like, here's a whole bunch of information for you to review. And it was good to have that. It was good that there were all these resources, but it was so overwhelming. And I just remember feeling just beyond overwhelmed with the idea. It was like, oh my gosh, I've got to go through all of this information and figure out what's going to be best.
Dev learned about MS with his wife.
Dev learned about MS with his wife.
We should not Google every symptom because the answer in Google is not the prescriptive answer that one should read. What we did, we spent a lot of time with our doctors, understanding the disease. And when I was understanding, I made my wife also be part of that entire curriculum of making her understand what the disease was, how it is, what is it, and everything. So, I would say that the understanding of disease was mutual, not just me being a patient. It was with my wife, who was my caretaker at that time. So, we both went through that same part of knowledge, which helped us, I think so, for her to understand comprehend me better, the pain I am going through or the trauma I am going through and finding new solutions for me. Rather than asking me questions, she tried to find out the answers herself.
Trust in information
Some people talked about their trust or mistrust of different sources of information. When looking up alternative remedies, Amy noted, “you have to start looking at, I think, who gains and if they have results, if they have posted studies and things like that. I think you just have to do some of your due diligence.” Debra N. maintained, “I try not to dig too much online because that's all a bunch of made-up crap. It’s like you don't even know what you can believe anymore. I just want facts. That's all I want to know. And I'll make up my own mind after that.”
Julia relied more on her doctors than on the internet.
Julia relied more on her doctors than on the internet.
INTERVIEWER: Do you do a lot of searching on Google and other things about MS and medications?
No.
INTERVIEWER: No?
No, because just like I told someone before, however much I can find out or know, I will never have this understanding that the doctor might have or will have.
INTERVIEWER: OK.
So, no, I completely rely on my session. And really, finding some information on Google is not equal to knowing something. Just because I remember that studying, for example too, if you want to write a paper, you have to reference and compare all kinds of sources, right? You cannot rely on one source. So, I don't even bother now.
Liz describes her trust in certain information and organizations like the MS Society.
Liz describes her trust in certain information and organizations like the MS Society.
I trusted the MS Society, because I felt that a lot of where their information came from, it wasn't just their opinion, that they had ways to back up their information. They had history. They had experience. They are involved in the research opportunities and so forth. One thing that they do is-- they did do, anyway, is once a year they had a conference or so, where the specialists in the area would come and talk. You could ask questions to different neurologists, different therapists and so forth. And they had drug reps come in and then people from, whether it's the library or different care facilities. So whatever kind of help somebody with MS might need, they were there. People that might help you drive or take your test again. If your MS was more progressed, maybe you needed help with different at-home equipment or at-home services. You were able to talk to therapists. And there's a dance program for MS people. There's just a variety of information. So, by going to that, as well, I was able to just walk around and talk to everybody and grab information. So, I've been able to pass that information on to other people. And then I just gathered all that information for myself as well.