Multiple Sclerosis…it’s just all in your head

Some mornings I wake up and simply don’t have the strength to get out of bed. I truly wish everything we go through each day was all just in our heads like some people believe. Those are people without MS who don’t understand the kinds of limitations we live with.

I guess you could really say it’s all in our heads though since our brains are filled with lesions; or how I like to say to people…it’s full of scars.  That’s what Multiple Sclerosis actually means anyway—multiple scars. Only for me I have a spine full of them too. Those scars are what’s causing all our problems and messing up our ability to walk, talk, think and feel.

Right now as I’m writing this, I’m in the bed struggling to type on my laptop due to blurred vision, a weak and trembling right hand, pain in my feet and an uncomfortable catheter tube coming out of my belly. All in my head? I wish it was all in my head.

When people say that to me—and yes, it has happened before—I want to smack them in the head. You know, I could actually do that and blame it on MS calling it an MS spastic twitch. All in my head? Really?

To those experts I say…I wish you could live in my body for a day. You would quickly give up your degree in neurology. Oh, wait, you didn’t go to medical school. You got all your schooling from Aunt Sally Sue down the street and Google University. In that case, you need to fire Aunt Sally Sue and even more importantly learn that 9 times out of 10, Dr. Google is WRONG. Yes, I said that.

But really, the internet isn’t what’s wrong. It’s people. We live in this weird period in time where people try to solve all of the world’s problems with bite-sized theories, opinions, one-liners and memes. Gone are the days of real knowledge. Opinions have become truth and everyone is an expert.

I know most people’s parents probably told them that they could do anything, but they didn’t mean in 10 minutes by reading something on the internet. Knowledge can be powerful, but you can’t misinterpret a tiny glimpse of information about Multiple Sclerosis and then declare to the world that you know all about it.

The next time someone says to me that MS is all in my head, I’m going to smile and say, “When did you get your degree from Google University? That’s a BS degree, right? Congratulations!”

8 replies
  1. Enelida Reyes
    Enelida Reyes says:

    Thank you Penelope for your bravery, for expressing what we will like to shout to the world and knowing that it won’t make much of a difference. You are an inspiration to us the ms community. Please don’t give up. Sending prayers your way.

  2. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope at least we can laugh at this. But it is so real for us. It is similar with many neurological problems and some of them are in their heads however MS isn’t just in our heads. Our bodies are broken and stuffs us up. You know this is a ‘male’ problem as we look at the solution and if it’s not there then we make one up. But I have learnt to ;live beyond that and I know there is not a cure in this world that is going to ‘fix’ this mess. We have to find ways to make changes in our life to make it better.
    I’m sorry to read you have a problem with your spc, mine is going well and with a 6 week change has been good. I did get a few weeks of leakage after the operation and that went away. There has been no painful episode related this either.So what has gone wrong?

  3. KT
    KT says:

    Bravo!!! Well said!!! I love the comeback. I might use that too…if I can remember, that is:). I completely agree, common sense is gone and the internet is not factually based, people. I’m so tired of self proclaimed doctors. Stay strong!

  4. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    Has your lap top cooled off? This was a very powerful post. If people would get their heads out the southern region of their body and take the time to listen and try to understand, maybe we would have some small brief moments of sanity.
    When asked how I feel….Good, bad and ugly…..pick on and we will talk.
    Yes it is in my head……stand still and let me smack you in yours.
    “Oh the human factor…that is why I love my dogs and cats.”
    Be well Penelope. I am happy I found you.

  5. Leah
    Leah says:

    Actually it is in our heads…they’re scars in the brain. You’re right it’s incredibly frustrating to listen to all those “know-it-all” folks! Did you try this?…did you do that?…why haven’t you tried to do this? Well now I’m being screened for medical cannabis which supposedly helps with spasticity and discomfort. Hopefully this will work…if just a little. I tried Botox injections for spasticity which did absolutely nothing. I’m still on the hunt to find something that actually works for spasticity. Thanks for sharing:)

    • Dawn
      Dawn says:

      Leah, I recently started on medical marijuana. Since I won’t drive impaired I was prescribed CBD oil and THC. I use the CBD oil twice during the day and the THC at night. I am having good results with it in terms of sleeping better and a lot of pain relief. I hope you find relief soon.


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