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Depression or Denial

I was diagnosed with RRMS in 2009. When I was diagnosed, I was told that I had it for about 15 years according to the lesions. At that time, I was in shock but it also explained all of my past clumsiness and forgetfulness, which I blamed on partying too much in my early years.

I was put on Copaxone. I hated daily shots and blamed them for my up and down moods, headaches, weight gain and welts I would get on my legs from the shots. I figured I had lived with it (MS) for so long without knowing…I would probably feel normal again without these shots. I stopped taking them. That was not a good idea. I had what I know now to be my first relapse and was put on short term disability due to the stressors that I used to be able to handle before my diagnosis. MS now became real to me when my MS doctor explained to me what was actually happening inside my body with MS. Again, I was shocked by the reality that this was actually happening to me being that I still felt what I remember as “normal”.

Of course I was scared at this point and hoped that my MS had not progressed too much that the doctor would put me on a different medication. I promised I would take my shots regularly if he allowed me to stay with Copaxone. I was lucky that I received that chance. It has now been 5 years since that last MRI. So much has gone on in my life since then…divorce, layoff, loss of loved ones and tons of stress that comes from the frustration that I am not who I used to be. I knew/know all of my feelings about myself and who I have become have had an effect on my MS but I have not gotten an updated MRI. Truth is “I’m scared” to know, but at the same time, I’ve finally reached the point where I have to know. I feel it has to have progressed being that I’ve been depressed more than I can ever remember; I’m tired all of the time, no energy nor desire to do the things that I once enjoyed.

Is this normal for an MS’er or should I start accepting that it has gotten worse? I’m praying that I, like with most things, am just thinking the worse. I have now started reading blogs looking for successful stories that we CAN live a full, happy life with MS. Thank you for reading and please share thoughts.

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Comments

  • Julie
    2 years ago

    We all come to that point that we realize that we have an illness that isn’t very noticeable from the outside but we know on the inside we could have bad things going on.
    I can’t tell you not to think about it because after 17 years I still do occasionally. It’s the unknown that is scary.
    Continue to do as the doctor asks. It will all become a part of your life and you won’t think about it as much (now that’s a sad statement! LOL). I don’t know when that happened with me. 10 years after I was diagnosed, I was still asking my neurologist if I really had MS, couldn’t it be something else?

    Join a group online if you don’t think you can do a group meeting. This one is a good one because you can express your feelings and cry and no one will be the wiser! Other MS’ers are really great people. I’ve met several in person that I met online. They understand us because they are walking the same road as us.

    I wish you good health.
    Julie

  • Cathy Chester moderator
    2 years ago

    Hi Sylvia~

    You have been through so much so whatever you are feeling is certainly understandable. You’ve had a loss of sorts, including your MS, and it would be abnormal if you didn’t have negative emotions The key is to take each day as it comes, do something good for yourself (sitting outdoors and listen to nature, spend time with a dear friend, go to a movie, spend a day at the beach, get a manicure….) and listen to what your heart is telling you.

    There is no shame in reaching out to others for care and comfort – family and/or friends – to help ease your way. Communication is key. People want to help, believe me. If not friends or family then a counselor or spiritual advisor. It’s healthy to talk to others about what’s going on in your life. I’d suggest you do that.

    There is no “normal” with MS since we each have it differently and we each respond to medication differently. Make sure you have an MS specialist (neurologist) who treats only MS because they know MS better than other doctors. If you are not happy with your doctor then make a change. Your doctor and nurse practitioner should be part of a team working together to make the best choices for you. YOU are part of that equation, so your needs should be heard and met. Do your research, make a list of your questions and needs and bring them with you to your appointments.

    Go easy on yourself and don’t judge yourself too harshly. It’s not always easy living with MS but you can have a quality life once you see yourself as still having many abilities you can use to enjoy life. My blog is AnEmpoweredSpirit.com where I write about living a positive life despite MS (I’ve had MS for 31 years.). Many of my MultipleSclerosis.net colleagues also have blogs where you can find good information as well.

    Best of luck to you, Sylvia, Thanks for sharing your story and being part of our community.

    Take good care~
    Cathy, moderator

  • Sylvia V author
    1 year ago

    I’ve just recently logged on to my account & thank you for your response. Since my last post, I did get an MRI which was not what I wanted to hear. My dr thinks it’s because I wasn’t dedicated to taking my shots, which I do admit is true. He now has me on Techfidera. I haven’t had any issues with this med but I guess my next MRI will let us know. I look forward to joining your blog because what I need the most are people that understand this very aggravating disease. Again, thank you for getting back with me.
    We will touch base again soon.
    Sincerely, Sylvia ‍♀️

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