It is what it is & I am slowly dealing with it…

I am 37 & finally got diagnosed with RRMS after a year of tests and trials. It was a relief to finally know that I was dealing with some very serious issues but it has been very hard to grasp the concept.

I have been asked to see a counselor now because my boss can see that I am not dealing well with all of this. The medication I am on has had serious side effects. I can’t eat without feeling sick and anything I eat goes right through me.

My meds are finally being tweaked after over a month of trying it at the full dose.
I just really wish people would understand that I am not really fine and I am just putting on a front to trick people.

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Comments

View Comments (3)
  • Azjackie
    3 years ago

    Hello, these stories all sound so familiar. Luckily? I was able to be diagnosed quickly. I kept the pain and agony hidden for 5 years from everyone. It is still raw today as when the words were coming out of the doctor’s mouth. That secret did nothing but hurt everyone and especially me. Others will never know what you are going through unless you tell them. I mean everything, every detail. This helps build their knowledge and understanding to enable them to help you. I do not recommend telling an employer, it ended my 20 year career, but I do recommend friends, family, and relationships. A stronger defense and bigger offense. That’s all for my sports talk. Don’t forget to say you are not looking for pity and they should treat you the same. They will learn when you are quiet or need to rest you don’t feel well and will need their support. Acting isn’t for this. I wish you well.

  • Eyelit6557 author
    3 years ago

    I start counseling on Friday…just knowing it is happening is already a comfort. People sympathize with me and my diagnosis and want to know more.
    I am on Tecfidera and am gradually going to increase my dose to the rwcommendation…it just takes time. Your article was very helpful…thank you.

    Jenn

  • Lisa Emrich moderator
    3 years ago

    Hi Eyelit,

    I just wanted to let you know that talking with a counselor (in my case a ‘licensed clinical social worker’ LCSW) can be extremely helpful. Not just for dealing with the emotions that accompany and follow a diagnosis, but also with learning new skills to manage various challenges.

    I hope that you are able to get your medication routine tweaked enough that you can continue using the disease-modifying drug of your choice. It’s amazing; we really do have 13 choices in medication now for MS.

    Regarding putting on a brave face, you might appreciate a post I wrote earlier this year – https://multiplesclerosis.net/living-with-ms/youre-doing-great-and-other-masks-we-wear/

    Best wishes,
    Lisa (site moderator)

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