We are in this together

Opinions run rampant online. There are opinions about the best hot sauce, the worst kind of paint, the biggest pickle, the oldest tree, the most popular actor, and the greatest song of all time. Those opinions are interesting to hear, but without fail the discussions will turn into heated arguments and name calling. I never knew someone could be so passionate about a pickle before, but they exist.

I don’t know why people can’t accept the fact that not everyone will agree with something they think. Growing up I was taught to respect the opinions of others even if I disagreed with them. Slander, sarcasm and rudeness wasn’t involved. We simply agreed to disagree and continued to enjoy one another’s company.

Today, I don’t see that kind of behavior much anymore. It seems that most people’s opinions are expressed as fact and if you don’t agree with what they have to say, you are defriended, bad mouthed and talked about.

That happens a lot when it comes to a persons choice in how they approach their Multiple Sclerosis treatment. The world is filled with opinions on what to do. But keep in mind, they are opinions. Some are based on personal experience, others are due to information read online, which we all know is 100% fact…right?! (grin)

There is no cure YET for Multiple Sclerosis, only symptom management. Just because one person eased their symptoms by standing on their head while eating a dandelion and humming “She’ll be coming ’round the mountain” doesn’t mean everyone will. But hey, if you want to try it, by all means do so. Just don’t talk down to those of us who don’t. Besides, if I could stand on my head doing anything I’d be grateful. The only time that happens is when I fall out of my chair trying to tie my shoe.

To the people that don’t have MS who are reading this…don’t try to fix us. Accept us for who we are, MS and all, and love us anyway. Be our friend, not our enemy. There’s a lot more to us than an MS diagnosis. We are lawyers, teachers, mothers, fathers, bosses, neighbors, companions and classmates. We are people just like you. Sure we have a chronic illness tagging along with us everywhere we go, but it doesn’t define who we are. Look past our MS and see us instead.

To the people who have MS…respect other MS’ers choices. We are all in this together and need to be standing beside one another in the fight, not throwing punches. Let’s lock arm in arm and create a strong wall of strength that not only helps us to stand but keeps one another from falling.

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.

31 replies
  1. Lisa Marie Laboch says:

    EXACTLY! I’m newly diagnosed. 1 week ago today. My family that I thought would be behind me and be supportive aren’t supportive at all. They don’t know anything about MS, they don’t even knows what causes, the effects it has or anything. Just that I need a second opinion and anything I say I’m feeling is all in my head. And any symptom I have such as my left eye pain and getting blurry, my mother says ‘i have the same thing and its not ms” …. they also compare my pain that sometimes cripples my hands so bad that I can use them to saying ‘ WELL YOUR 86 YR OLD GRANDMOTHER HAS ARTHRITIS” She gets around and still in pain and she doesn’t have ms ….. so it’s a never ending battle. I’m so stressed out because of my family’s crap that it brought on another flare up. I regret so much ever telling them anything but usually “normal” people don’t do this kind of thing to a family member that gets diagnosed with something thats serious. So it’s me myself and I and ms …

    • terrie
      terrie says:

      Lisa, I have the same damn thing with my family!! Mother-in-law says “sometimes if you try not think about it, you’ll feel better!!” maybe its “all in your head”.. I am disgusted, my own husband thinks it not so bad..he said a few times “you don’t have it bad”.. Yes I am glad I get around, but he could never live with the pain I feel daily! They have “selective denial”….Try not to let it make you sick…I don;t think they know what to say..

  2. Lauren Gargano says:

    Perfectly put!!! I couldn’t agree more. But on the other hand, I don’t mind people’s opinion that have MS. I like to know what people do to help their symptoms, so I can try it out. If it doesn’t work, I’ll try something else. Wahl’s Protocol helps me, but it may not be for others. What annoys me are the opinions coming from people that never experienced this disease or understand it. I know a few people that made this disease seem like the flu, when I told them I was just Dx with MS.

  3. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Yes people are crazy, but that’s why we love them. We all have different make-ups and have different thoughts about things. I have found this apply s to all parts of our lives. If we cant accept ‘different’ people then we should live in a cave. Just think, the other person may feel the same about you.

  4. Nancy Jones
    Nancy Jones says:

    I love this post, too. I read it and feel understood and vindicated that I am making the correct choices for myself in spite of all of the opinions of others. I was diagnosed two years ago but learned I’ve had MS for much longer, about 7 to 10 years. I did not realize how many people will make uninformed statements on what I should or should not do until I was diagnosed. The diets, the medication, how I should exercise, get more sleep…come on people..I am an adult and I know what I need to do that is best for me! If I don’t know about something I will research it, I take naps when I need to, I am on the best medication for me per my neurologist, and I eat healthy with a light smattering of chocolate when I need it! I do get a kick out of some of the advice I’ve been given, and yes the broccoli diet was one of them!! Go figure! Have a great day Penelope and everyone! Arms linked and hold strong!

  5. Heather Adsit says:

    I got so tired of opinions and Facebook friends and family thinking I’m not..
    Working out enough
    Eating right
    Sleeping enough <--- that's true.. but sleep is hard Many opinions... And I got sick of being downed. I started taking some on. Good friends who saw my point and accepted it didn't work but I tried... I kept 🙂 Those who where still mean.... I removed from fb. Family who didn't stop.... I stopped taking to as much as I did. You say it right as always 🙂 If it was so easy we would not be here 🙂 We are in this together 🙂 (Hugs) to all fellow MSers 🙂 We know what's real.... don't let anyone make you 2nd guess yourself 🙂

  6. Judy Jolicoeur says:

    This comment is perfectly timed. Thank you! I tried to ask a simple question about symptoms in a “discussion” group this week, and I specifically stated “please don’t send advice about neurologists and drugs, just would like to hear your experience regarding these symptoms.” Guess what I got back? 😉 I really don’t understand this!

  7. Lew Chapman says:

    The thing I hate is when someone acts “cured” by something new that had the debilitating symptom of a numb finger or something but was just really dealing with fear.

  8. Sónia Alves says:

    Sory the english, I’m portuguese.. Thank you for this page! Since I become MS every body knows someone with MS who has a normal good life… Medication works for them, for me even fingolimod isn’t working well… And everybody looks at me as if it was my falt… I havê a full time job, a 11 son, a husband, bills to pay, a house to care… I don’t want to be skick, so I strugle, every single day.

    • Ermelinda Maria Lopes says:

      E lutamos todos os dias. Pessoalmente decidi ariscar parar a medicação até uma nova crise. Com alguma sorte haverá melhor medicação. Se um dia tiver que ir para uma reforma antecipada, prefiro que seja porque a doença progrediu e não porque a medicação me lixou. Mas não tenho nem marido, nem filhos. Por isso vou arriscando. Boa sorte em tudo e não se deixe ir abaixo pela incompreensão dos outros.

    • Sónia Alves says:

      … Você tem coragem! Deixar a medicação para mim não é opção. Em 3 anos já vou na terceira (betaferon, tisabri e agora fingolimod) e ao fim de alguns meses o meu corpo habitua-se e deixa de fazer efeito. O fingolimod é neste momento o último recital que existe e o meu maior medo é que deixe de fazer efeito ou o estado deixar de o fornecer gratuitamente pois é carissimo. A minha terapia alternativa é o meu trabalho e no dia em que tiver de o deixar vai ser o início do fim! Recusei sempre a baixa médica, já fui trabalhar de bengala, com um olho vendado e um cateter na mão para a dose do dia seguinte . Faco-o pela minha família e por mim… é uma forma de não baixar os braços, de não pensar.
      … Não sei como é consigo, mas os meus médicos estao sempre a dizer-me que sou super saudável… Tenho aguentado sempre muito bem os medicamentos sem efeitos secundários visíveis.
      … E claro, tomo anti depressivos… Na minha cabeça contínuo anão aceitar que estou doente… Mas, minha amiga, nunca baixarei os braços!
      É bom poder falar com alguém que passa pelo mesmo. Um abraço!👍

  9. Sara Fielder says:

    I just started shutting people down as soon as they try to mention the new fad diet. My rule is…you can talk to me about it if a real doctor is trying it, or, better yet, if it is in clinical trial.

  10. Nancy Pierce says:

    Amen- I get so tired of people- although they “mean well” who have no clue as to what I go through on a daily basis- the 24/7 pain- weakness etc- With the “Oh I get tired too” comments sometimes I just want to slap some people- I just smile- and tell myself- yeah if they really knew !

  11. Eric Ostdahl says:

    thing that makes me mad us the dr’s. two years of you have a bulged disk pushing on nerves. thats why your left leg is numb. then a few more mri’s a spinal tap and its no its m.s. oh dang. ok . well what about the bulged disk? the answer from them is we arnt worried about the disk. 3 dr’s. was it never nothing or do they feel its not worth it cause i may lose feeling anyhow. gets frustrating

    • Terrie
      Terrie says:

      I had the same exact experience…It’s radiculopathy, sciatica, migraines, Even the neuro ordered EMG of my entire lower extremity and diagnosed me with pinched nerve from sciatica!!! Maybe if she would have ORDERED an MRI, I would have saved 6 long years of seeing MANy different docs, I could have saved tons of money but most importantly I could’ve started treatment and would have less damage done.

  12. Pixie Boris says:

    Love it….
    My sister’s cousin’s boyfriend had MS and he ate broccoli 3 times a day and now he can walk fine.. He may even run a 5k…
    Ahhhhhh… Just drives me

    • Val Hanna says:

      Well my friends sisters husbands uncles great grandfather’s wife’s sister in laws grandson ate prunes for breakfast lunch and dinner and well he was cured and lived till he was 107 if you try that you never know…:-D

  13. Shannon Powell says:

    I’m sick of getting lectures from well meaning people and I am newly diagnosed. Lol. I’ll listen to my husband and parents but that’s about it and it’s only because they have to listen to me whine!

  14. Hope Wissel
    Hope Wissel says:

    I am so grateful that I found this page. As someone who is newly diagnosed, I am struggling. I feel alone since my biggest obstacle is how MS has affected my memory. It has hit my brain the hardest – I often wish that I could have the physical pain because I know what to do with that but what do you do when you can’t remember things that are important to you. I would love to connect with someone who struggles with these same symptoms. Having lived through my grandmother’s alzheimer’s, I fear even more loss of my memory. You are an encouraging light in the morning. Thank you.

    • Penelope Conway
      Penelope Conway says:

      The cognitive struggles are hard, but try not to worry about tomorrow and what “might” happen. Those “might’s” usually don’t happen. Use post-it notes, schedules and alarms on your phone to help with reminders. They make a world of difference. xoxo

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