No announcement yet.

Recent diagnosis of ms and in huge denial

  • Filter
  • Time
  • Show
Clear All
new posts

    There's a book a friend got me called The First Year: Multiple Sclerosis. It was written by a medical writer with MS named Margaret Blackstone. So much of what she wrote [You may find yourself angry seeing people not taking care of themselves, especially if you've lived a healthy lifestyle] I could empathize with and it made me feel normal. Yes! I see people smoking and want to smack the back of their heads.

    Even though I teach art I could tell there was CNS involvement and I was pretty much [expletive deleted]. I glomed onto the thought maybe it was Lyme Disease. I also went on a quest to remove the "clerical error" of having a CIS recorded as MS, but the neuro pointed out past lesions, even though I was asymtomatic. (Well, remembering back I had had trouble swallowing but thought I was being dramatic.)

    I think it's normal to want to deny something like this. I've kind of transitioned to "I wish this never happened" or "I hope there's a medical breakthrough" or just living for that groggy moment when I wake up and forget I have it for a fewe minutes.


      Denial is definitely not just a river in Egypt

      After about 4 years in denial I went straight to rage, rolling right past anger.

      Now I accept the beast within, and although I can't laugh at it I do respect it.

      Get support is my advice: others who live with chronic pain and/or a disability. You need to know others who "get it".

      Also, keep taking a MS med; this is one disease that never stops. (IMO)

      Take care and never forget to smile, you are a !!!

      God Bless.


        I am also recently diagnosed with MS and everyday I tell my husband maybe I don't really have MS, however, if I listen to my body and the different symptoms I face each day I then think I must have MS. Give me a good day or good hours with minimal symptoms I go right back to the denial and think maybe I don't have MS after all!

        It comes as a relief to hear the denial game does not mean we are crazy and in time this phase of the diagnosis will subside.

        I wish you the best in your journey!

        Michelle D.


          No advice but know you're not alone. I was diagnosed 17 days ago and I am in denial and want to stay here because it's too scary to face. I am pretty convinced that once I'm over this current flare-up, that will be the end of it. No active lesions and none on my cervical spine per the MRIs, so I just like to think it won't get any worse, especially since I will start treatment. Maybe not realistic but it's keeping me from totally losing it.
          No sir, I don't like it.
          Diagnosed August 30, 2013.


            Thank you to everyone that has given me such great advice. It really helps to hear others stories and to know I am not alone. Good luck to everybody on there journey with this disease.
            I keep reminding myself my diagnosis is life living not life killing and this seems to help a bit to.


              Ah, "De-nial", it's not just a river in Egypt!

              When I finally got a positive diagnosis there was no more denying it. The symptoms had gotten so bad I had to go straight on to many, many different meds to control all things going wonky with my body. When things started to settle down a bit with their help, I went through a period of "not thinking about it" as a coping mechanism. I did go through the "stages of grief", as many do, anger and acceptance being the ones that held me up emotionally for many years.

              We each face MS with different perspectives. When I feel well I try to grab life for all it's worth. When my symptoms flare up every life-grabbing moment goes straight out the window and I'm convinced I'll never be 'normal' again.

              Take it one day at a time, one small step at a time and try to make informed decisions for your care as you go. That's all any of us can do. Just talking about it is a positive start on this long journey ahead of each of us.


                I'd say you are accepting your diagnosis quite well. You have already started a treatment despite being in denial. I actually stayed in complete denial for 9 years (yes, that seems ridiculous to me now). I had opposing physician's opinions as to my diagnosis so of course I chose the one who said adamantly "you don't have MS". I had one family member (a brother who has MS) who tried to get me to treat my MS and one family member (my husband who was also in denial) who said I was fine. Again, you can guess which one I listened to.

                Being in denial allowed me to live a "normal" life (I taught gym full time and just basically did what I wanted to do) but it also kept me from starting treatment earlier which probably would have kept my disease from advancing as much as it now has. We can't go back in life so I try not to regret those lost years of lost treatment and have gone forward listening to and following my MS specialist's advice.

                I'm thankful for people on sites like this one who share their experiences and discuss medications and treatments. It is so much better to not be in "denial" and instead be facing the reality of MS. I'm sorry about your diagnosis and would encourage you (and the rest of us as well) to continue to face this disease head on.