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A door creaking open in a dark room. I bright light shines in from the unknown.

MS & Fear of the Unknown

I was diagnosed with multiple sclerosis (MS) almost 9 years ago, and as many people will tell you, being diagnosed with a chronic disease can be rather scary. Even now, all this time later, and after all that I’ve been through, I can still remember a lot of the details of that day pretty clearly, including how I felt and what I was thinking. While everyone might give you a different reason for why being diagnosed with MS was scary to them, I would argue that a lot (but definitely not all) of the fear that comes with a diagnosis like this are probably all the same thing just hiding under different disguises. People naturally fear the unknown, and considering the fact that most people don’t know too much about MS when they receive the news that they have it, I would say it’s safe to assume that their diagnosis came with a lot of fear. In that one moment in time at the doctor’s office, there was so much that I realized I didn’t know, so many questions that I now had! My mind was instantly flooded with an ocean of unknowns.

Why are people afraid of the dark?

Most of us (whether we have a chronic illness or not) can all relate to this concept of “unknowns” causing fear through the simple fear of the dark, even if we only ever experienced it as a child. I mean, let’s be real here, the dark was scary, right? Why though, would anyone be afraid of the dark? The mere absence of light? Well, that’s a dumb question, everyone knows the answer to that! Monsters, of course! The dark is scary because that’s where monsters hide! “Calm down, there aren’t any monsters hiding in the dark,” an adult most likely assured you, but that didn’t really change anything, did it? Why not? Because you didn’t know for sure that there were no monsters. You still had no idea what was actually in the dark despite what the all-knowing adult was assuring you. Darkness is probably the best representation of “the unknown” that I could ever think of. People are afraid the dark because they don’t know what’s in it. People are afraid of the unknown.

Knowledge is power

If you ask me, being diagnosed with MS is like being pushed into a dark room that you’ve never been in before. You have no idea what’s in there, so naturally, your mind starts to wonder if there’s a “monster” lurking in the corner. The only way you can know for sure is by turning on a light so that you can see what’s there, right? So, if the dark represents all the unknowns of MS and those unknowns are causing you fear, then how do we get rid of the dark? We flip on a light, of course! In this analogy, knowledge is our source of light because knowledge allows us to answer many of the unknowns that come with MS. Knowledge is power.

A life full of unknowns

As we learn more about our own illness, we become able to see that we are not just in an empty room, but in actuality, we are standing in the entrance to a large maze full of many dark corners. This is life with MS. A life full of unknowns. But the more we learn about our illness, the more light there will be to show us what’s around each corner, and the easier it will become to navigate this maze. We will probably never be able to eliminate 100% of this darkness, but the more we know, the less dark corners there will be to hide surprises in our maze. Don’t be afraid of the dark; turn on the light, and see what’s there. Learn all you can about MS so that your maze, your life, will contain less of the many scary unknowns that MS inevitably brings about. Knowledge is the flashlight we get to bring along on our journey to help us illuminate the dark labyrinth of unknowns that MS pushes us into. How bright that light is depends on how much we are able to learn about our MS.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • bandi
    2 weeks ago

    From the moment I was DX’ed In 2002 I’ve been having the MS Hug. After my Appt. my hubby and I stopped for lunch. And I went into the bathroom and broke down. Here I was 3 months with Twins and I have MS?? Fear for my babies, fear for my husband and what this disease had in store me and my family. . My Neurologist told me that the pregnancy would probably put me into remission. But come back with a vengeance after my Babies were born. My Twins were born heathy via emergency C section. But as years go by I’ve had multiple relapses. But after the 10 Mark I’ve fought multiple MS symptoms. I used to tell my mother “Mom I have MS. MS doesn’t have me”. But now days??? I’m not feeling that way

  • chrispy
    3 weeks ago

    I think you are amazing!

  • Linda Bush
    2 months ago

    I always say, “MS, the disease that keeps on giving!”

  • Joelle Buck
    8 months ago

    I ask for the light to be extra bright at the end of the tunnel, because I don’t see so good anymore !
    And than I am grateful, in spite of this monster inside of me,… ,”. You have actually written of your experience with MS and little did you know that it explained what I was going to through !!! ( You have been that extra bright light that allowed me to see ). Thank you for as sharing . I encourage you to continue .. I have hope for us all that we will not believe the lies this disease plants. Remember …. FEAR. F = FALSE. E=EVIDENCE. A=APPEARING R=REAL. FALSE EVIDENCE APPEARING REAL!!! FEAR IS ONLY A BRIEF MOMENT. BECAUSE THE TRUTH WILL BE REVEALED .. SO KEEP SHINNING THAT LIGHT ..

  • Matt Allen G author
    8 months ago

    So true! Glad you connect with my writing!

  • Contalita
    8 months ago

    Thank You, soooo much Matt Allen G! Your comment really help reassuring me and it helped me remind myself that education is key so since I first posted that message I know a lot more about MS then before, I of course started with the internet with legitimate medical information, but; also found that my local well known hospital in Lancaster PA has a great Medical Library with updated info.available to not only the doctors but; to the patients☺! ( a week of using the internet really tired out my eyes lol!

  • Matt Allen G author
    8 months ago

    lol the internet can be a great tool but sometimes good ol’ books are the way to go!

  • potter
    8 months ago

    I was nearly suicidal after my neuro called me on the phone to let me know I had MS. I had one aunt who had MS die of brain shrinkage recently. She had been in assisted living since her late 20’s. My other aunt who had MS also was at the funeral needed a lot of assistance with her walking. For me the diagnoses was a big black hole with no way out. It’s been eleven years and I still feel like there is this black hole waiting for me. Denice

  • Matt Allen G author
    8 months ago

    I suggest keeping up with the latest MS research. Maybe look up the MSAA Reseach Updates, we have come so far in the last 20 years, the last 10 years, even the last 5 years! While we may not have been able to treat MS so well back then, now there are so many more options that have resulted in a ,uch better prognosis for people

  • Contalita
    8 months ago

    On Feb.6th 2019 & 1wk. After an MRI of my head and a lumbar puncture, I was diagnosed with MS, this didn’t come as a surprise to me because exactly a year ago my same neurologist Ramey through the same test looking for Carpal Tooth Syndrome(CTS) and Lupus, & because I had one parent that had Alzheimer’s I qualify for the genetic testing the good news was I didn’t have a genetic predisposition for the disease.The problem now is the nephrologist that I have(since 2015) it’s very good the new style was delivered by his blundersom PA & this was the second time that I was meeting with him,so; one understand not only was it, the starting to get the news but also very irritating because he couldn’t really pull up the MRI of my brain on his computer so he fooled around with the Falcons this trying to get it to come into view and finally I could see the area of what they were concerned about, his voice became rather shaky( as if I’m sure to give me the information) I always believed that information is key( facts over fear) so he delivers the information…you have MS and that pretty much wrapped up the appointment,yes; I was pissed because of not having this information being given to me by my doctor but also the fact that when I asked the receptionist for a copy up of today appt. and the test results, her reply was let me see if I can pull them up on the computer and when she did she stated he already closed out on the notes cheetahs take this form and you can fill it out and send it back in it is so you can request for patient information… I let her know that anytime you have any appointment do you usually get a follow-up that’s what you needed to do thereafter as well as the results of any testing, I couldn’t fill it out there at the office because I use a shared-ride service they were due to pick me up so I took the form home completed it & send it in the next day( while waiting 5 to 10 weeks as she stated it would be before I receive the copy) the allotted time pass and nothing, I phoned the office asked to speak with the PA the previously reviewed the information with me, he wasn’t available so I was back to speaking with her, then she told me something ridiculous did they have had the patient information form back although I didn’t check a box where previously when asked if I had slight depression I had checked yes and that both forms needed to correspond( the original form that she were speaking of, has been completed back in 2014… now I had to resort to a calm but, firm version of Judge Judy… I requested her to pull up all the information of the last appointment and simply stated to her, that; I thought it was ridiculous, that I should have had a print up of the appointment and she was well aware of this and, also any literature concerning MS (after all it was a neurologist office) I wrapped it up by asking her to ask the PA to Simply write up a statement of the appointment confirmed the findings of the test & wrap it all up by telling her after all I’m not asking for the Moon. The information that I have found on valid websites like this one along with the hospital’s medical(carries updated books concerning MS) has been very good, and, because of all myself researching…by now you have probably guessed that my main concern is should I locate a another neurologist & I also learned that I should be building a team qualified doctors physical therapist ect, as well as re assessing my later in life plan…Uggh!( currently in my late 50s) if this letter sounds as if I’m overwhelmed, I’m not, for mini it’s just the ebb and flow of life and I simply have to start planning the best thing is I found the site and I am open for any suggestions☺!

  • Matt Allen G author
    8 months ago

    Wow, talk about making things difficult! Well, it sounds like you are “going into this” much more prepared than most, so that’s great! “Fact over fear”, love that! I would probably seek another neurologist, even if only to possibly get a less stressful staff to deal with. I wish you luck!

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