Well Meaning Words, “But, You Look So Good!”

After living with RRMS for almost 30 years now, like others that have heard this said to them (But, You Look so Good) I am sure they are tried of biting their tongue just like me. I just wish people would understand that just because you have MS does not always mean you are in a wheelchair! I lost most of the vision in my left eye 3 years back. 10 years ago I had 2 eye surgeries on both eyes which did help. This was from Optic Nerve damage with MS. Seems to be very difficult for others to understand, mostly I hear-“Yes, I have vision problems too!” The same thing when I mention fatigue, my friend will say – “Oh, I understand I get very tried too!”


I just wish that when people say things that are not informed about MS they would ‘Think’ first! There is a lot of information out there and it is very easy to look up on the internet all about MS. This disease is a very difficult one to live with daily because it is like a roller-coaster, that is why it is so important to try & stay positive. I am very fortunate to have a husband of 40 years by my side who makes me laugh (does not feel sorry for me) and 2 wonderful rescue pups that entertain me as well! My son has always cared but never makes a big deal (this is very important) and I am very grateful for the wonderful friends who have always stood by me no matter what! Living & learning about this disease has not been easy, but I think taking each day as it comes & not stressing-out over what will be has been the best for me. You have to think of life as a Great Road Trip. If you spend too much time looking back at where you’ve been, You’ll miss what’s ahead! You really have to do what is best for you.

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Comments

View Comments (6)
  • SharonB
    3 years ago

    Curious what the eye surgery was or what they did that helped. I lost partial vision (reading and color) to optic neuritis from MS.

  • Julia Saltzer author
    3 years ago

    SharonB, My first eye surgery was for Cataracts in my early 30’s on both eyes, after that surgery I had pretty clear vision & was so pleased. It was about less than 1 year later before 1 eye started to cloud over, so they went back in to clear it up(they call it polishing the lens)when both of the lens started to cloud over the doctor explain to me that it was no longer anything to do with Cataracts, it had to do with Optic Neuritis from the MS and he could no longer polish the lens or there would not be any lens left! I have lost most of the vision in the left eye, but still have partial left in my right(very sensitive to light)wear special dark glasses day & night. I do have to use eye drops 2 times a day because of drying & pain in both eyes…I still feel very fortunate because I am doing well getting around & my medications seem to be working okay. I know it could be a lot worst!

  • Caroline
    3 years ago

    Hi I have just been diagnosed, having lived with the initial episode for three years.

    I liked your write up, especially about people not feeling sorry for you. Suddenly I am overwhelmed by people giving advice, by people also saying well what’s wrong with you anyway. It is all consuming and very isolating.

    I have a huge urge to run away to some isolated retreat with a big sign saying please please just leave me be.

    My daughter is 8 and fantastic, she doesn’t know about MS, she just understands that mum isn’t always good, we don’t dwell on it, she treats me just as mum. My two dogs are great Rocky and Charlie they get me out of the house, wag their tails and am teaching one of them to help around the house.

    The rest of the world oh boy, I have a professional job and am trying to negotiate flexible working including at home where I Have peace and tranquility, they don’t understand that bit.

    Then my parents who constantly fuss and look at me like I am dead already, to ill informed people who think I have a bad back lol, or ask if I am feeling better.

    So I loved your article it made me smile for a change

  • Julia Saltzer author
    3 years ago

    Caroline,
    It was great to read that my article gave you a smile, we need that more then anything! Hang in there & like I said take each day as it comes because you really have to do ‘What is best for You’. I just did an interview with The Home T. http://www.thehomet.com/blogs/blog
    http://www.thehomet.com/blogs/blog/78178819-multiple-sclerosis-awareness-a-talk-with-julia

  • mascha
    3 years ago

    Thank you for this great story.All the things mentioned is how I have experienced it.Stressing as I do now with MS is hopeless and your last words are so true.Will take your advise 🙂

  • Julia Saltzer author
    3 years ago

    Mascha, Your Welcome…I think more than anything,the best advise I could give anyone is to take each day as it comes & you really do have to do what is ‘best for You’ because everyone is different with this disease. I just did an interview with The Home T.
    http://www.thehomet.com/blogs/blog/78178819-multiple-sclerosis-awareness-a-talk-with-julia

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