Community Answers

  1. 29babygirl says:

    I remember after trying to get disability for over 7 years I was aporoved. At that time I just ended up with 3 herniated discs in my back due to a drunk driver hitting me. When I called about the approval they had the nerve to say they figured out MS is a real disease. What was it before fake ….just saying some people can be so uneducated.

  2. ripster says:

    I firmly believe that unless someone has the disease they truly cannot understand the nuance that we go through…. I have too many symptoms to list. But they don’t understand that one day certain issues aren’t to bad, but others are worse. I have pain in my feet and some days I just feel like chopping them off to alleviate the pain.. even though I know it won’t. Lol. I feel even the doctors don’t truly understand, let alone disability!!!! I’ve was denied also and will see a judge in another year to decide if I’m worthy of getting benefits. I pray I receive them. prayers to all

  3. Sylvia V says:

    I guess my reaction is “it could be worse”. I can live with MS, its just a struggle. Sometime I forget i have this chronic illness until the pain, fatigue and lack of energy reminds me. Its a very frustrating disease and i get irritated with myself but stay positive.

  4. Marcia says:

    Last summer I had a horrible relapse, I had a very hard time walking. My husband wouldn’t let me use a cane in front of his family cause he didn’t want them to see me this way, I’m 44.
    One day while visiting them my MIL

  5. I don’t get excited or take offense when people who know very little about MS try to offer their uplifting feelings that my disease is not one that comes with a death warrant. In a weird way they try to cheer me up though it’s not needed. I’m never down in public and rarely by myself. My initial reaction at my failure to perform certain tasks, is to get mad at me for being a clutz. My MS is progressive and is beginning to really show itself. While I can still walk a little and still exercise on a stationary bike (I ride for 30min on t, th, sun and go 15 miles) but I’m worn out then. I quit driving because my eyes don’t work right. While I can drive a little in town, I never get on a highway and have had to use public transportation to get to doctors or my infusion therapy. Anyway, life is still a bowl of cherries with cool whip. At my age, every day I wake up is an opportunity to achieve something. I’ve managed to do a lot of things in my life. I know the end is nearing and while I fear the pain, I’m not afraid of the end.

  6. 29babygirl says:

    When my daughter was diagnosed with hodgekins lymphoma stage 4 in 2016 I told her I would love to trade places with you. She told me no Mom I will go through aggressive chemo and radiation to cure cancer. There is no cure for M.S. She said I wish there was. She also said she would fight like hell to be here for me. I thank God everyday that she is still in remission.

  7. KCDavis says:

    I have had well meaning people ask me what my life expectancy is…..which is ignorant and insensitive. As well as stating the “at least it’s not (fill in the blank)” statements. It is dehumanizing.

  8. Tess says:

    What I can’t tolerate is when people tell me “well, it could be worse”. Yea, it could be but I still have to battle the daily pain and fatigue, that you don’t have to. I don’t say this but I really want to. Ignorance.

  9. OliviaJ says:

    Actually, some cancers have a fairly good ‘cure’ rate.
    I once had a friend with ALS who asked me what was the difference between ALS and MS because at that point, we were both stumbling around in similar fashion. Oh, dear Jane, I told her, MS is chronic, ALS is fatal. Which is why I’m still around and she isn’t. And I do thank the heavens that I’ve only got MS. I’m grateful it isn’t ALS or some other fatal condition.

  10. 1e3wm9t says:

    Oh, I hear you. I think when people say this they are minimizing the diagnosis. That immediately alerts me that they have no understanding of what MS is, and how devastating it can be. I’m not going to give them the benefit of the doubt, as you so generously have done. For a long time, the untrained eye could not tell that anything was wrong with me. They couldn’t “see” the bouts of optic neuritis, the depression (which I believe is caused by the disease; not a reaction to it), and they couldn’t “see” how tired I would get. Once I had to start using a rollator, NOW the world knows that something is up. I guess this is why there’s still a need for MS Awareness Month. Great post, Ashley.

  11. Rahael says:

    sometimes I’m just shocked at the comment and don’t have words to say. Not having words to say is sometimes a good thing for me because I tend to fly of the hand. I do get this comment quiet often Nd it irritates me to no endj. I’m sorry for those with cancer and other illnesses, but I’m tired of seeing and hearing about cancer especially. If MS was talked about as much as cancer then maybe people wouldn’t make such comments. BTW my bff of 30+ years passed of cancer, so I hope no one see’s my comment as ….OK lost the of what I was saying. Ugh! Well, I hope you know what I mean. Thanks for sharing!

  12. Kelly McNamara moderator says:

    Thanks for commenting, Rahael!!! The comparison can be so frustrating! Each person’s experience is unique regardless of the condition! – Kelly, Team Member

  13. RuthGeller says:

    I’ve had MS for over 30 years. When first diagnosed I would get very upset by the insensitivity of so many people. It took me a while to realize that there are, and will always be people whose lack of awareness and whose inability to tune into the debilitating symptoms, handicaps and trauma of MS, is just ‘who they are’. And how sad that is and what does it say? What becomes evident is that whether someone they know has MS, or cancer, or ALS, or lupus, or Parkinson’s or the myriad of chronic health issues that afflict many of us, they can’t see or feel past their own hangnail. What I learned was that when I got stressed out by the lack of response from the significant number of jerks out there, or even disappointed by the lack of understanding from the many who care about me, that stress would exacerbate all my symptoms. So I learned to look at them differently. I amended my expectations with greater insight; I became more perceptive; better balanced. On so many levels I have allowed myself to approach their insensitivity; and handle my physical, mental, emotional distress in a better way. So – are there still jerks out there? YES! Do they still get to me? Sometimes!. But not as often; and definitely with less anger and disgust. Bottom line ….. In my mind, heart and spirit, I’m in a better place.

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