MRI of brain

Multiple Sclerosis…It’s 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 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 and one-liners. 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!”

MS Gets on My NervesMS WarriorMS Superhero  

About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

72 replies
  1. Carolyn Henry says:

    I have disc degeneration in my back. Last year only 2 discs were affected. Now it’s from the top of my neck to my butt. Sucks. I’m actually look forward to the steroid shots

  2. Kelsie Herceg says:

    My goodness is it ever ignorant for someone to say a disease they have no experience with is “all in your head”. Just baffles me, at least have the decency to look up the biological definition to understand it before making such assumptions.

  3. Rachel Glaser says:

    Hey, how did you get a picture of my brain?! I try make the best of every day no matter what and I do what I can to be as healthy as possible, including laughing. Laugh a lot!

  4. Della Smalley says:

    It is in our head like you said,I just got done with my brain MRI n the person who reads it said do you know you have lesions dam all she had to do is read my records n it plainly says that I have MS,IM GETTING TO THE POINT OF NO MORE MRI’S.MS SUCKS

  5. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    There’s a lot of garage on the internet but some is good. You just need to check with a retractable person to get them check it out to make it real. I have been on a site that is from StemCellnewZealand and it is quite interesting what they are doing. But I have told our doctor and she is going to look into it so I’ll lat you know if it s good. Keep your head up and don’t let the monster beat you

  6. Esther Dickinson says:

    Nice writing, hits home and not just for our friend MS, but for everything. Knowledge is powerful, we are looking at the demise of learning and the acquisition of real knowledge. I sometimes think we are entering a new dark age.

  7. Sharon
    Sharon says:

    As a psychiatrist once told me this is a disease that literally is in my brain. I can’t do any of the antidepressants though think it’s worth experimenting with. Problem is when you live in such a weird body experimenting is another stress. Sorry your day is so rough. You are an incredibly bright compassionate person. Have you ever looked into the low dose naltrexone ? Some folks swear by it. I have tried it 3 times but still not sure it is for me. Rest easy today and hopefully you accept it better then I do who even though still ambulatory with a walker and scooter after 27 years spends way too much energy getting upset by it all

  8. Lavonna Nix says:

    I love the closing of this with the BS degree from Google University. If the people I’m around cared enough to read about MS on Google, I would be utterly impressed. I love that I’m not the only one with a weird sense of humor about this whole MS thing.

  9. Emma Edmunds says:

    Does anyone else suffer from really itchy legs, especially at night? Driving me crazy, hard enough dealing with MS when u have a good night…..wondering if it is MS or something else?!

  10. Wendy Steinberg says:

    I’m so sorry you have lesions on your spine as well as your brain. As of now I only have them on my brain which makes me so foggy at times. Keep up your positive attitude. I think that really helps.

  11. robin lowey
    robin lowey says:

    Yes was told i have MS just christmas past they said i have had it for years i was blaming my heart conditiin on it but no and im struggling to accept it even though theres nothing i can do about it how they missed it years ago i dont know until a new neuro surgein picked it up and did all the tests on me but still no medacation to treat me

  12. Hope Wissel
    Hope Wissel says:

    I hope you are feeling better soon. I LOVE reading your posts. Today especially touched me because it seems like this is what I silently “hear” from friends, family and even sometimes the doctors. My symptoms have been going on for about 3+ years and it is only in the last 6 months they did a spinal tap and confirmed the MS. Now we are looking for answers for another possible auto immune disease. It has become a standing joke with my hubby “it is all in my head”. Yes, it is since this is where the lesions are on the left side. Hugs my friend. I will keep you in my thoughts and prayers.

  13. Vickie Gwilliam-Stewart says:

    I would like to know if we purchase stuff from your shop its for you right? I dont want to buy stuff if its not going to someone who needs this! There are so many adds with shirt sales n such but i dont think the money actually goes to the cause and no one answers lol so you get this yes? Lol

  14. Veronica Summers says:

    hi….I like reading your postings….I don’t have ms…my daughter has it…I can relate to your comments…the more we post maybe someone out there will find a cure to stop this terrible illness….thanks for your positive up lifting words….bless you….

  15. Leah
    Leah says:

    I’m so sadly stricken to learn you’re feeling like ‘crap’. My MS state is not great either, but nothing as dire as yours is presently. As you know very well, MS symptoms change for the better or for the worse daily…with any luck they can occasionally remain stable. I pray tomorrow will be a better day for you Penelope…keep that positive, warrior-like attitude that you so generously share with others for yourself today. Tomorrow is a brand new day:) God bless.

  16. Beatrix Huber says:

    As far as I recall it doesn’t just mean multiple scars, but scars in head and spine, that’s when the sclerosis becomes multiple. However… mine looks as nice as yours. Sending <3 from one scarred head to the other. 😉

  17. Adrian Horne says:

    Fingers crossed on this new American drug. I don’t usually go with anything until it’s a certainty (being a scientist) but they actually say it looks good for RRMS and PPMS – which I, having PPMS, find refreshing xx

  18. Lynde Friedman says:

    I know you try and keep this a positive place… I need some positive feedback on antidepressants.. I was a nurse… I’ve tried them all. But now I have been off them for 2 months( first time in 15 years)… I’m not sure which is worse one them or off . I really can’t decide! Asking you all seeing we have so much in common

    • Kellie Louise Sutton says:

      I was on a few antidepressants over the years, for Depression and neuro pain. Three at once up until I was experiencing hour long episodes of full body shakes this time last year. I was petrified that it was a relapse and it wouldn’t get better.
      My Neuro decided to take me off all antidepressants (that scared me witless as I had been taking antidepressants for approximately 9 years and didn’t feel like I could cope without them)…. 12 months on I’m off all antidepressants.. It’s been a difficult time to get through but I’ve been seeing a counsellor, and learned lots of different ways to deal with anxieties and other stuff. My body shakes went immediately and I feel like a completely different person. It was so worth it for me.
      Lynde, I know everyone is different keep your gp in the loop about how you are feeling and maybe get a counsellor to help you through coming off your meds. I’m sure if they feel you need to go back to them they will tell you. Good luck you’re doing well xx

    • Lynde Friedman says:

      hi I did find lexapro helpful.. might go back on it. I recently got off cymbalta which was really good at the start…. then fizzling out… so I decided ….”Enough”. But now I have to rethink the options seems I’m fizzling out being off something…

    • Jennifer Fielder Mapes says:

      Kellie Louise Sutton Have you looked at Essential Oils? My daughter who has MS has developed a protocol using Essential Oils for her MS and is doing great. It’s not for everyone but she was way too many synthetic medications…and managing side effects was the worst.

  19. Samantha Bell says:

    This is so true. My neurologist is saying exactly this and blaming all of my symptoms on fibromyalgia even though i was diagnosed six years ago with ms, then four years ago with fibromyalgia. He wont treat me with steroids when I relapse and denies I have ms symptoms. Im not given any ms medication such as disease modifying and yet it appears I relapse twice a year. He has palmed me off completely and said I need to see some one about fibromyalgia. He also stated my symptoms are real to me yet I have no neurological deficit as of today. He states I only have up to three dots on my mri scan yet three years ago i had a large lesion on my spine also. Im currently waiting to see if I can see another neurologist at a different hospital though its one that he also works at. The illness is a battle daily but so is trying to get medical help too. Bless all of you that also battle, I really do understand just how difficult things are for you too. Be kind and gentle with your self because there’s not a lot of care out there and you are doing great with getting through one day at a time. Stay strong and keep talking because one day we will all be heard by those who have the ability to make things better. #msmatters

    • Amy Dotson says:

      You need a new doctor. I also have both ms and fibromyalgia and it is a tricky balance but for me, ms takes precedence when treating and when I manage it well…I usually am managing the fibromyalgia along with it.

    • Samantha Bell says:

      Amy Dotson thank you for your reply and im really glad that you are managing both your ms and fibromyalgia. It’s very hard having both and you do well to cope and balance your treatment. I am currently waiting to see a different neurologist because the one I have been seeing for four years has not taken my ms seriously and prefers to say it is all a consequence of fibromyalgia as though i do not know the difference between a fibro flare symptom and an ms relapse. Despite me telling him my symptoms he has disregarded them as being in my head! He has admitted that he has very little knowledge of ms and this may be what is attributing to his attitude/opinion being very unhelpful. Having a good health team makes all the difference and im hoping to get that sorted out. Wishing you many more good days and blessings for the not so good.

    • Donna Courtney says:

      Well it’s a good thing you have a very large one! Keep fighting! MS is not for the weak that’s for sure! I’m sure it’s a constant battle that none of us who do not have it will ever understand! But we do pray for you!

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