It’s not your fault

I don’t know why people like to point fingers when something goes wrong. It seems like a common occurrence these days. If I was to drop my ice cream cone on the ground, even if I was super careful while holding it, I could blame the cone creator for making it too tall, or the weather for being too hot, or the wind for blowing just right, or a barking dog for distracted me.

So many factor could be the cause, but does it really matter why it fell? Is that going to make the ice cream jump up from the ground and land back onto the cone for me to enjoy? Or, should I simply be thankful that it didn’t land on my best leather shoes permanently staining them with chocolate fudge and caramel?

Can we accept what has happened with an attitude of “it is what it is” and move on? No blaming, no finger pointing, no scientific calculations of wind velocity vs. walking speed, just it fell and oh well.

I know when it come to multiple sclerosis people like to point fingers at something or someone as to the cause. I have heard many crazy as well as plausible theories myself. Maybe you’ve heard some of them too. Things like…

“You have metal fillings in your mouth. I know that’s what causes MS because I read this blog on the internet about it.” Well, I don’t have any, so I guess that one’s debunked for me.

“You must eat a lot of artificial sugars like aspartame. That’s why you have MS.” Well, I don’t. So, hmmm.

“You don’t get out and exercise like I do, after all I’m out running, biking and hiking every weekend.” That’s another no-go since I exercise daily. Just because I can’t do the conventional exercises doesn’t mean I’m not working out.

“You don’t have multiple sclerosis at all. It’s actually Lyme disease or it’s just all in your head.” Another conspiracy gone awry.

Many others have shared stories with me of what people have told them as to why and how they got MS. It’s frustrating for a person with MS to have people flinging around unfounded statements just because of hearsay or something they read on the internet when the fact is no one really knows what causes MS.

Theories and opinions run rampant online, but that’s all they are at this point. And a majority of them have a tendency to do more harm than good in a person’s life. Someone going through the struggle of  living a life with a chronic illness feels bad enough already…piling on some sort of guilt trip and blame, now that’s a double whammy.

Once someone is diagnosed, do the how’s and why’s really matter anyway? Shouldn’t the focus be on today rather than yesterday? Yesterday can’t be changed…but there’s a whole lot that can be done with today.

I know many of you blame yourself. But you have to know that you didn’t cause MS. It’s not your fault. It’s not like you woke up one morning and decided you wanted to get a chronic illness. You didn’t do anything wrong, so don’t listen to those thoughts. They are lies and lies aren’t worth any of your attention. For whatever reason, it chose you, and regardless of what you think I know you are strong enough to handle it.

You may not feel like it right now, but you will make it. You are brave and even brave soldiers stand in the middle of a battle with knocking knees! It’s okay to be afraid, just don’t let that fear paralyze you and stop you from facing the day. You can do this. Today is a new day and tomorrow is full of possibilities.

MS Gets on My NervesMS WarriorMS Superhero  

About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

69 replies
  1. Stephanie Beck
    Stephanie Beck says:

    I’ve heard and been told all these things and more. People are just plain stupid. I have or had a close friend to tell me if I would get up everyday, put on regular clothes, put my contacts in and put my makeup on, I would feel like the old me and everything in my life would be so much better. If I could do all that every morning I wouldn’t be sitting at home all day. I’d be working at the job I loved and still mourn after 8 years. I have sisters who have made the comment that I just got complacent being at home and now I’m just so lazy that I’ll never go back to work and the other sister said, while I was fighting (for 5 years) to get my disability, that my disability would NEVER go through because there was nothing wrong with me and also had the gall to tell my son that if my disability did ever go through, I was a fraud and she couldn’t believe I was going to take money every month, money that should be going to someone whose really sick and deserves it and that I would be taking money from some little old person who could barely pay for their medicine much less any groceries. My mother is in complete denial. She’s one of these people who helps EVERYONE in the community with meals, rides to the dr or visits just to keep them company, but I’ve seen her twice in a year and a half and she made the comment that I could come see her sometime yet she knows I don’t drive unless I have to and I’m having surgery on my hip in a few weeks and I asked if she could possibly help us out (I have a 15 year old at home who is homebound due to a chronic inflammatory disease) and her reply was well I’ll try but I just doubt if I can be there much. So my best friend who lives in New York is coming down to stay indefinitely to help my husband take care of my son and me. And my mom made a smart comment about her visiting so much and us using our frequent flyer miles to fly her back and forth and the reason we do is because my mom has checked out of the caretaking role with me. And the sad part, it’s not like I was just Dx’d and she’s in denial, I’m 46 and was Dx’d when I was 18, it’s because I have a husband who can take care of me and I or we make my medical decisions and SHE’S NO LONGER IN CONTROL. I could go on and on…. I went to Mayo in MN last spring and was out there for 2 1/2 weeks BY MYSELF because my husband had to take care of our son and not once did my mama call to check on me. NOT ONE TIME, oops I lied, she called when it had been 2 weeks and she left me a voice mail asking me if I was going to be home in time for the movers to come (we were getting ready to move from NY back to NC). Even after I came home, she, to this day, has never asked about my trip to Mayo.
    I have finally came to a peaceful place within myself concerning my two sisters and my mom. It’s a place where I had to accept their ignorance and my moms absenteeism and just cherish what little, paper thin, feelingless relationship that I have and go on with my life. I have enough drama and other things to concern myself with. I accept help from a few very close friends and just know that I can’t and don’t ask my family for help. I have a wonderful relationship with my dad and he’s my mental and emotional support and is there to listen at anytime.
    So I get stupid people and unfortunately their not strangers at the grocery store or coworkers, they are the people who you normally lean on for support and the people who are always supposed to have your back, they are my immediate family members.

  2. Lauren Singer
    Lauren Singer says:

    I used to talk about MS rage. Now pent up rage. I hear myself scream inside. My self talk is harsh. Not married, no children in mid-50s. In wheelchair. waste of space.

  3. Debbie Schutt says:

    Yes sad to say I heard them all…Plus you must have done something awful in another life that you are being punished now…..Yep. I think that comment pretty much caught me off guard….Really people….Do not say anything….We do have feelings…. I have enough to deal with do not need the stupid comments….

  4. Kathy Hamilton says:

    Well, how good it is to know that I’m ‘in fashion’ – NOT. I’m told I’ll be cured if I: drink water with positively charged ions, eat kale, use toothpaste without fluoride, have veggie smoothies every day, take Vitamin E, have a blood transfusion, etc. (None of these ‘facts’ were from anyone with any degree even remotely related to a specialty in autoimmune diseases.) Oh, yeah. I’m also supposed to get rid of my cats and wear only natural fibers. 🙂

    • Kathy Hamilton says:

      A colleague recently told me I have nothing to complain about as I have the best parking place. (I fought for two years to get a designated handicapped parking space at work.) I was so shocked that I replied, “Tell you what. You take the MS, and YOU can have the ‘good’ parking space.” You can’t fix stupid, but sometimes you can duct tape it.

  5. Rosemary Baird says:

    The uninformed are experts on a disease that years of medical research still can’t find a cure for. (Yes and I’ve heard this one too…’that’s because the pharmaceutical companies are into making money out of treatments not a cure’.) I try to tell myself that they mean well when they become accusatory for not seemingly following their ‘advice’.

  6. DeeAnn Herrington Bennett says:

    The other day when I took my son to his doctor appointment, the Nurse told me that MS is a “fashionable” diagnosis but it’s really caused by a poor diet or environmental toxins. She said there’s no way that this many people have MS or other auto immune diseases. I had never heard anyone call MS “fashionable”. Geez!

    • DeeAnn Herrington Bennett says:

      Patrice Brady she was a Family Nurse Practitioner. Really sad that she had that perspective. It totally discounts my experience and everyone else who has MS as well. Wearing a designer dress is “fashionable”, having MS is not. 👎🏻😬😢

    • Debbie Vance says:

      I would suggest you report that to the Dr. He may not know this nurse is acting this way. Not only were her comments callous and cold, but she also has no right to undermine the diagnosis of the Dr. I don’t feel I could trust her with anything at all after this incident.

    • DeeAnn Herrington Bennett says:

      Debbie Vance the nurse didn’t work for my neurologist, she works for my son’s pediatric urologist. We somehow got on the subject of my MS because I was sick that day with an ear infection and sinusitis when I took my son in for his appointment. 😢

    • Nicci Neil says:

      I would of said its fashionable to think you are an expert on MS. Everyone thinks they are an expert on MS which is sad because you are so ignorant. And your ignorance is hurtful.

  7. Joann Cady says:

    I went to my neurologist a few days ago and was surprised when he asked me if I had a few symptoms and I simply said yes. Almost said can’t you see or can’t you just tell. Made me realize other people can’t see or tell everything going on.

  8. Karen L Burns says:

    I’ve read and heard most of the above..I had teeth removed after reading about root canals (no change)..I altered my diet because I dieted too much (no change). I also was referred to a councillor…he told me everyone had a little ms!! I was on my knees by this stage….which makes places like this page soooo important! We can only learn from each other..non ms’ers have no idea!
    Thank you

  9. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Fortunately I have not been blamed for the MS. If you look back on where it all began you could blame the Celtics for it. They came from the Franco/Germanic area and laid curses on their enemies so it may have come from that. So we are not to blamed for that!

  10. Elaine Murphy says:

    It does annoy me when people say stupid things like this – just today in our local paper it said that this young girl finds work has helped with her MS – wtf! How the hell can it help? It’s tiring having to get up early every day, it’s tiring doing a full days work – where do these people get their information from? Grrrrrr……

  11. Judy
    Judy says:

    Thanks for your passionate writing, Penelope! Love everyone’s replies! Wishing you all an early Happy New Year! Be well! xxoo

  12. Martina Reck says:

    Oh it’s always that other people know better what I should do but I have it for 15 years now and think I know my body very well. It’s horrible that others can hardly accept me as I am. I have accepted myself with all the failures. Now I don’t just have to fight the battle with myself but with others as well.

  13. Adrian Horne says:

    I was diagnosed PPMS in 2008/2009. My GP told me it was due to SALT or genetic or smoking. In my first cover letter to work for days of testing my neurologist described me in glowing terms:
    “This gentleman has leg pains and gets tired” Apparently thats a neuro view of MS !!!
    I once called a cousin to advise her of my diagnosis to which I got
    “Oh, yes. My sister’s got ME too – it’s that Yuppie flu!!!” xx

  14. Lisa Schmaling says:

    I heard the lyme disease not m.s. parents always said its all in my head well they were right its lesions in my head n active one in my neck for a. Month. They still think im faking n showed the mri to my dad. I always get the you look fine to me. Well they dont know how much pain im really in. The invisible disease that. Alot of people dont know bout. I hate it

    • Kris Tymchyshyn says:

      Oh yes.. I know that… I was suffering for a long time and it wasn’t until I woke up blind that anyone in my family listened to anything I said… Sure we look fine on the outside but you can’t deny something is seriously wrong when you can’t even feed yourself because you shake too horribly.. Can barely walk because the shaking and numbness make you look drunk…
      Your family will eventually understand.
      For me it took almost 15 years after my diagnosis to.

    • Lisa Schmaling says:

      They will never understand my parents are stubborn and dont believe me since I was a kid. My hands are paralyzed now and they know that too. Plus I went to therapy to learn how to walk again now gonna have to teach my hands too. After i get feeling back if it comes back.

  15. Madysen Skye says:

    I guess Im confused which lesions are they looking at to diagnose. Ive had multiple ER Drs ask me if I have MS but no one will give that final diagnoses. I have T2 hyperintense lesions and multiple tarlov lesions and cyst. All in my spine from C spine down nothing showing on the head mri yet for lesion. So is it a specific type?

    • Kris Tymchyshyn says:

      I think it must be how they look? I have sponges tissue for pretty much the bottom of my spine and my neurologist says it may not be ms related but can definitely contribute… But I have large ones in my head, i did need to get a biopsy for one of them though because it was that large.

      • Rodger Ashton-Smith
        Rodger Ashton-Smith says:

        It doesn’t matter where they are, it’s all the same. MS is multiple attacks on nerves somewhere in your body.

    • Shanen Pendleton says:

      They did a spinal tap ( among a cat scan, blood tests, hours in mri) but they said I have 2 of the 3 markers…since then I have not heard anyone else mention this test being done.

  16. Kathy Buys says:

    It is the last thing I need–yet over & over I hear it. Not always firsthand, rumors & lies & speculation come out & it is cruel & I don’t need any more battles. MS sucks, doing the best I can is where I am. It’s not what I want, it’s my battle, & I will be so grateful when it’s over. Think before you spew your insults & ridicule, they snowball.

    • Ms.Body
      Ms.Body says:

      @KathyBuys… hey we have the same initials😉hangintherehunWEcanNOTbedisheartenedbythePUREunadulteratedignoraceofothers!!! As a matter of fact don’t even dignify their statements with a response😑 Try to REST easy in trusting that what goes around comes around and what goes up MUST come down! Absolutely nobody knows the toil and strive we face on the daily except those of us that are directly affected by this illness!!! Hence let me encourage you to do what YOU can when YOU can and simply do YOUR best and let ☝🏾HIM ☝🏾take care of the rest!!!

  17. Yvonne Lucas says:

    It is so annoying when people brag about keeping fit and running, I think”lucky you” Even my husband thinks I got it because I’m old and unfit. I always exercised when I was capable and had a good diet but having had it for 45 years it’s progressive and conventional exercise is now very difficult, still hoping for the cure but it’s slow coming,

  18. Shannon Powell says:

    The future scares me. I would rather not think about this beast within me, but it won’t let me forget. I’ve heard a lot of these things too. Sometimes it hurts, but what scares me most is taking down the Christmas tree. Silly, huh? I can’t help but wonder what I will be like at the next Christmas. I have progressive relapsing MS and I just want it gone

  19. Erin Haley says:

    Another A+ post Penelope! It’s so frustrating dealing with people (even other MSers) who want to play the blame game. I think my worst was when one of my psychology professors in college told me that my MS was caused by some repressed memory of abuse. It’s so important when dealing with a chronic illness to live in the now, and not the past.

  20. Leslie Beaver says:

    I have heard little of this foolishness. Being tall and male helps keep tongues from wagging, likely. But I have great sympathy for those who have heard such idiocy.

  21. Cindy Davey says:

    Well, with well over 25 lesions in my brain, I guess it’s really all in my head but, wait, I have lesions throughout my spine too! My (& many of us) most frustrating thing is to not have people explain away my fatigue with “I’m tired too” or take a nap & so on. It’s great that you have this forum where those of us that have it, get it! Thank you.

  22. Leah
    Leah says:

    The latest theory to curb MS is to refrain from eating gluten, dairy, sugar, salt and to go organic.
    All this to repair ‘leaky gut’ issues. Wheelchair bound Dr.Terry Wahls who had an advanced level of MS succeeded by following this health regime and is no longer in a wheelchair and now walks and bikes. I really wonder if this is fact or fiction? I have been on this new regime for over a month now yet see little if any difference in my condition. Maybe it’s too soon to tell if this is doing me any good besides making me lose 10lbs and spend more money on groceries!

  23. Amanda Phelps Herx says:

    I was told, by a doctor I did not solicit advice from, that he once had a patient that was misdiagnosed with ms because of a past cocaine addiction. I tried not to laugh, hardest drug I took was Advil (until my diagnosis). We laugh all the time about that unsolicited diagnosis. Myth debunked as I have NEVER even seen it, let alone done it.

    Also told this weekend that if I go to a Pentecostal church and ask god, he will heal me. I asked this individual if they go and ask for healing. They said yes. I said, how’s that working for you? While I respect people for going to church and I believe in the power of prayer to lift a persons spirit to know they are not alone, that is not an answer to our illness.

  24. Samantha Laurie says:

    OMG heard all of those -friends and family are only trying to be helpful but …. umm no…… I have MS …. so far I haven’t progressed and I probably had MS for about 20 years. I was diagnosed in 2003 and it was touch and go but by the end of 2016 I have minor relapses and steroid treatment ASAP and I’m fine however the background symptoms don’t go away – fatigue, tripping over my feet, temperature issues, heat (grr) and cognitive stuff – wrong words etc
    But you know what – I wake up every day and thank the universe that I am still active, working and being me xx one day my MS will catch up to me (it’s degenerative) but I’m hoping that it won’t be till I’m in my 80’s or 90’s and then it won’t matter so much – BTW longevity is in my family – my gran is 102 and still going strong xxxx

  25. Angela Corrie says:

    Argh aspartame!! I followed a lifestyle page that told me I I gave up aspartame I’d be cured z they posted many articles that supported their cure. All quoting one study done by one doctor that no medical school in the world has heard of, let alone given a degree too!!
    When I pointed it out I got banned and blocked!
    On a side note, I haven’t had aspartame in over 3 years and I still have ms.
    Myth Busted

    • Angela Corrie says:

      Thanks Samantha, I only gave it up cos carbonated drinks were giving me gas 😉 I’ve got a family to look after so I just do what I can now and don’t worry to much. They did have some great recipes though 😁

    • Robert Krone says:

      I read a page claiming a lot of people were being misdiagnosed due to the stuff, and even told the story of her sister and her experience. Only problem with her MS symptoms going away after having or drinking something and giving up aspartame is that what she was describing matched what happens with RRMS, lol.

Comments are closed.