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Fear of the Unknown

I was diagnosed when I was 32, and have been living with MS for 6 years.

I have managed my extreme fear of needles, my fatigue, my exacerbations and symptoms, but what I haven’t been able to manage is my fear of not knowing.

I have been so very lucky in so many ways, I still work FT, I still am able to walk and have no visible disability. In my head though, at night and when it’s quiet I am afraid of not knowing what life will be like physically when I am 45, or 55.

Recently, I saw a commercial for the MS Walk with a man in a wheelchair encouraging people to walk and I burst into tears. What if that is me and all of those moments when I say to myself, I will to that later won’t happen? I would be able to “deal” if I know what is ahead, but the fear of not knowing what will happen with walking, my bladder, my eyesight, etc. is worse than any reality. I can do a lot of damage in my own head. I turn to sights like this because I don’t talk about these things with anyone. I don’t like to make it any more real than it is.

I feel as though somehow writing it hear will release me from that fear, if that makes sense. I hope that communities like this allow us all to release our fears and work together to support each other with both the unknown and the known.

There is power in community and although many of us may not want to admit it, we are part of a community of people living with 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.


  • ydress
    6 years ago

    I have to agree with LynnSmith Having Faith and keeping a positive attitude will keep this illness from getting the best of you. There is always a silver lining in all our struggle, you just have to look for it, it’s there sometimes it just takes years to realize. I had MS for 9 years, I remember when I was first diagnosed at the age of 43 now 52 years young, Shock and the disbelief this could be happening to me. I never really gave into having a life long illness even though the first 3 years were filled with ups and down’s. Having a 3 year old at the time and my own business made it even more difficult however I have an amazing husband that can never help enough, he is certainly always giving to other and has been healthy his whole life. My silver lining was I went off all meds and injections for 5 years because my 3 brain spots just disappeared.
    Today I have struggled for a year with 3 new lesions, on bad episode on my right side going numb, 2 MRI, 2 three day infusions, 2 antidepressants that MS severe fatigue caused. I could not do anything for months, all I did is sleep. My son was very confused and my husband did everything as if he was a single parent. I’m very fortunate I have them both and I do not work, even though we can certainly use the money to help pay all our MS expensive bills and medication. We are self employed and retail is very slow needless to say we are drowning in hospital bills, UGH!
    Now that I am going through this struggle again, I fear the unknown more than I did 9 years ago. I’m staying as possible as one can with a lifelong illness. I get Chinese Medicine acupuncture, cupping and massage once a week, I look forward to that day like a spa day. When I am feeling low, I look at is as a day to lay in bed all day and watch TV or FaceBook, When my numbness acts up I pop a xanax and sleep it off, when I get extremely tired I look at getting a latte as a treat at 3pm everyday. Everything has a silver lining. Take one day at a time and do not think of what has not happen or ever will. Have Faith, help others that can help you in return, having a support system is key. Take advantage of the all the good days you have because with MS it can change in a blink of an eye. I tell my husband he worries too much and every time he worries he looses a strand of hair, he is just about bald. When someone with MS worries that creates stress and stress makes our illness worse, you have to find way to relax, find a new non stressful job, meditation, yoga, massage treatments, Jin Shin Jtyusu , walking, having a friend you can have tea with and talk all these things help. Stress will change nothing but make things worse so don’t waste your energy on any of that nonsense, look for good things to look forward to. You will live a better joyful life. xox

  • Josh
    6 years ago

    One fear that I constantly struggle with is when I get ‘older.’ I know of many people that have had active, fulfilling lives with MS, but that is not a guarantee. Being a pessimist (a flaw that I try to control), I cannot at times, help but rumminate on the worst possible outcomes. But, to combat this, I also agree with the idea of the power of community! There are many days that I have been through by simply reading accounts such as this one. I do not often reply, but just the act of reading that I am not alone is often refreshing. Thank you, all who share!

  • Lisa
    6 years ago

    I am in definite fear of the unknown. I have this attitude of – I’m going to control this condition, it will not control me. And then I fear that this is just so horribly naive and I need to get a grip and realize this is for real. I was only diagnosed a few weeks ago…not sure what to expect.

  • LynnSmith
    6 years ago

    Hello Ali,
    2 weeks after I was diagnosed, a woman named Laura sat next to me at a conference. She had been diagnosed in 1967 & just started using a cane for fear of falling & breaking her hip. She told me to keep “my faith.” Faith in what ever God I believed in, the Dr.’s who cared for me, the people in my life, but, & most importantly, to keep the faith in myself. If I pictured myself in a wheel chair in 10 yrs, then I would be. But if I pictured myself walking thru the rest of my life, then that’s what I’d be doing. New discoveries are being made every day & tomorrow there could be a cure! Or a very incredible break thru that stops it in it’s tracks. So never let fear of the unknown take away your faith.

  • Tammie
    6 years ago

    I think my worst fear is a wheelchair too, but I try and “plan for the worst and hope for the best.” I do know that when I was diagnosed in 2009, there were only 3 approved treatments and now there are 10 I believe. So, research continues at a rapid pace. In my support group, we have all spectrums of disease progression, and it has actually helped me to see those in wheelchairs continue life with so much determination and accomplishment. If that comes, as my husband says, we will face it together. Ali, you are not alone. Tammie

  • Carla
    6 years ago

    I too have those moments of fearing the unknown. This is the first time I have been on here. I dont know a lot of people around my area who have MS who I can talk to. Many do not understand the disease and dont think anything is really wrong. I have the hardest time dealing with the heat come warm weather and then the fatigue and not being able to do what I used to do. I was diagnosed in 08 but was first sick with symptoms in 05. It just took 3 years to confirm it and get on medicine.

  • Sonya
    6 years ago

    This is a wonderful avenue to “talk” with others who face the same difficulties & fears you do.
    I don’t know anyone in my area that has MS, so I find it difficult to make people understand the challenges. I first had symptoms in 2003, but wasn’t diagnosed until 2006. I live in the south, so I totally understand about the heat!! We had a few days last week, in the 80’s ,& I was already dreading summer. Fatigue is one of my biggest challenges, & not being able to start & end a day as I always have, without rest periods; but I remain mobile, & I still have my eyesight, so I am thankful for these blessings.
    I hope to talk to you again. I frequent this sight often. It helps to talk with others who do understand, & offer their support.

  • Karen K.
    6 years ago

    Ali, I think all of us with MS have a fear of the unknown to greater or lesser degree. I try not to let myself dwell on the “what-ifs” but it’s hard sometimes. What I am finding out is that as each of the things I worried about comes true, it isn’t nearly as hard to deal with as I feared. During my last exacerbation,in October, I had to start using a wheelchair(temporarily, this time at least). Even though this had been my biggest fear, I found I was relieved when the wheelchair was delivered. I ended up being more independent with the wheelchair than I was without it. The reality of my increasing disability isn’t fun, but it’s not as bad as my imagination made it out to be.

  • Lori
    6 years ago

    I know the fears you speak of, I fear them too at times. I was diagnosed 2 1/2 years ago, but feel I have had MS since my 20’s. So take heart, I work full time, volunteer several days a week, and generally just try to stay active. I lost 90 pounds this past year to help me feel better about myself, but also thinking that it would be easier for someone to move me if I get to the point I am unable to do so for myself.( Back to my Marine Corps weight does make me feel GREAT!) I try to be positive, but prepare at the same time, I hate this disease……

  • Gina
    6 years ago

    Ali, I was diagnosed in 2010 at the age of 47. My heart wants hug you and tell you not to fear! I am a Christian, in a new marriage with 4 children combined (the youngest has special needs),but my hope has been and will continue to be in God. Even if you are not a believer, the fact still remains, that fear robs us of joy. I don’t know what my future holds, or how long I will be here, but no matter how things are going, I try to keep my focus on the needs of others. I know the fear you speak of, and I find myself standing at that door often, but I try to remember that there are SO many people hurting around us, we may have a different issue, but we can be there for each other. If we can encourage just one person now and then, we may help another one’s journey into being a little bit brighter. For me, reaching out to others helps us get our eyes off ourselves for awhile; it somehow removes some of that deep fear we can choose to hold onto. Doing a lot of research on the disease (fact helps us remove worry too)and sharing experiences and talking with others is very healthy–it will keep you from feeling isolated and alone. I will pray for you, that you will continue to talk about your disease and continue to hear from others. Support is huge! We have so much more available to us in this day and age than ever before. Research will only continue to come up with ways to help us and treat us. Have hope! And you are certainly not alone! God bless you, Gina

  • Sonya
    6 years ago

    I know your post was written to Ali, but I wanted you to know how much encouragement it gave me. I too am a Christian, & know that ” The Lord is my strength and my shield”…..Psalm 28:7
    This site has been such a blessing to me, being able to share with others who face the same challenges I do, & have the same fears. My family is very supportive, but they don’t really understand the challenges or the fears.
    Congratulations on your new marriage 🙂 I wish you many years of happiness. God bless you & yours.

  • Laura Kolaczkowski
    6 years ago

    Ali, The MS Community is very real, as you have written. Sites like this allows us to connect with others who understand and are invaluable for our emotional support. Not knowing is my biggest hurdle, too. Thanks for sharing your thoughts. ~laura

  • BethJ
    6 years ago

    I appreciate reading the feedback of others who experience similiar ‘hurdles’… we all have them, and I am in the last years of my life, so I am just taking one day at a time, and enjoying life as I know it, and never allow myself to think negatively, which is a constant struggle…
    counting my blessings is a big plus…after all, I and my late husband were able to see our Grandchildren, all 24 of them, grow up, and now, I can ‘see’ my great-grands, all 14 of them, learning about life to the full, because my Grand-kids make sure that they do, and so far, not one of them is showing signs of MS.

  • Cathy Chester moderator
    6 years ago

    What a beautiful reply, Beth. You are blessed in having such a rich, full life and I was so happy to read your reply.

    Ali, the fear of the unknown is palpable, and in the middle of the night I think many people think about it (even people without MS). Many times I am wide awake at 3AM and worries seem to creep in that are not there during daylight. As Laura said, we are all here for you to go along this journey together. Nobody knows what is in store for them. I try to live each day as fully as I can, trying to fill my moments with happy, joyful activities. It can be difficult, but I’m trying. I know you are trying to. Surround yourself with people you love and do the things that make you happiest. You deserve only the best. Cathy

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