Thursday, March 28, 2013

Why don’t they believe us?

The Unspeakable Bits; From A Life With MS

After months (or even years) of questioning our symptoms, questioning medical professionals, questioning “Web – the Great and Powerful,” and questioning others with multiple sclerosis, we have reached the inevitable answer: we have MS.

Why then do so many people feel like they have the right to question us?

We have just acknowledged the seventh anniversary of our Life with MS blog and in those years nothing has frustrated me more than reading about our brothers and sisters being told they were “faking,” were “lazy” or that their symptoms weren’t “real.” Look, I know people can’t see many of our symptoms, but I can’t see their heart beating within them either. Does that mean I should call them “heartless?”

Well, now that I think about it…

We all know that just because a symptom might be invisible, it does not mean that a symptom isn’t real. Many people will experience headaches in their day-to-day life, but would think us total jerks were we to say to them, “Well, you look fine to me.” Why then do some people – even some people who are very close to us – take up a pike and run us through with such phrases?  More importantly, why do we let them?

Self-Advocacy is a pretty broad and sometimes misunderstood term. I know I didn’t understand it fully when I first heard of it. It has to do with standing up for ourselves even if it’s difficult (or impossible) to actually stand. But self-advocacy begins with knowing what we need, finding out how to get it and not allowing anyone to tell us we are wrong.

We are not to be bullied – and make no mistake about it there are some people who will try to bully us because they see us as weaker than or even “less than” because of MS. We should not accept anything short of empathy from those we love and understanding from MS professionals. I believe we should measure people’s treatment of us and our MS the same way we would in any other part of our lives.

Would I accept a co-worker who told me they didn’t believe my computer was having trouble? Would I allow a family member to speak ill of me because my car was in the shop? Would I keep a friend who stopped asking me to do things because I wear green trousers? Would I keep going to an eye doctor who told me I could read his chart but wasn’t really trying?

A big, fat “of course not” to all of the above.

If people do not believe that I have MS, why would I want them in my life? If said people must be in my life (co-workers, for example) I mustn’t let them get away with this abuse. If my family pushes the bounds of decency, I am allowed to push back.

We do not have mythomania (compulsive lying), we have multiple sclerosis. Seriously; why won’t they believe us?

Wishing you and your family the best of health.



You can follow Trevis via TrevisLGleason.comhis Life With MS Facebook Page on Twitter and on the “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.


  1. Thank you SO much - this is all so well written and so close to my own experiences. Excellent post
    Love Gail

  2. I identify with this also..thank you. Sometimes I get that the same things happen to them from time to time and they don't have MS.

    Thank you for sharing.

    Stay Positive Keep Smiling


  3. This was so well written. I get so frustrated I just shut up and then people say what's wrong? You're so quiet. Really? I mean it is so hard to deal with everyday symptoms and peoples perceptions too. I have decided I have to come first; period! I am lucky I have great friends and a great family. They are so supportive. I also have a great medical team that listens to me and although they are conservative they never discount me.

  4. AMEN! Thank you for putting into words what all of us are thinking.

  5. Thank you for posting this, this too is how I feel most of the time. I too feel that those who keep acusing me of "faking" my symptoms....really don't need to be in my life or near me. I also feel if you can't be by my side when I am at my worst, then they don't deserve to be by my side when I am at my best!!!
    Tiff Yob...Temple, PA

  6. And yet after six years living with MS I don't suppose I will stop being abused for parking in the disabled parking bays at the shops.

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  8. I have said it before...I sometimes "fake" how I look to match just a fraction of how I feel. I will not put on makeup...I will "try" to look sick. How disgusting is it that I feel I have to put on a show to make others comfortable? This is mostly for my boss...who says she understands, has done research...and yet tells me all the time, "you look great today! You must be feeling fine!" (She's also the queen of telling me how so and so has MS and they are pretty much cured by so and so natural methods..ugh.) I'm very blessed for my family and doctors who never doubt me for a second! Thank you for another well written blog Trevis!

  9. Thank you Travis thank you, thank you. I've been struggling with accepting the fact that I'm struggling. So many times I've felt like the eye of judgement is on me. Like people think I'm making it up, it's not really that hard. Reading your blog, I feel a measure of peace. Some ease on my tension, I'm so glad you've done this and I hope continue to do so.

  10. I have this with the person who I used to call my brother, now he is just a bloke who happens to have the same mum and dad as me. He calls me a liar, says he wants to see proof of how bad I am and proof that I have MS, says he don't believe I'm as ill/bad as I say I am, reckons I can walk up and down 6 flights of stairs when the lift in my block has broken down (I wish) reckons that I don't need my electric wheelchair or my mobility scooter and generally hates me (the feeling is mutual). He says he has a bad back, I've never seen any proof of this (works both ways you know). He is a very short little man and all I can think of is that he has short man syndrome (oops on the spelling), he trust no-one not even his kids, who by the way, phoned my mum and also said to her that I am a liar, mum know different, she has seen me unable to move my legs and has moved them for me by pulling on my trouser legs, she has seen me trying to pick up my tablet with fingers that don't work, watched as my coffee splattered all over her clean table cloth because my arm/hand uncontrollable jerks, brushed my hair for me because I haven't the strength to do it my self and watched me cry and sob because of what MS has done and is doing to me. Thank you Travis for at least showing me that i am not the only person in the world of MS that is unbelieved.

  11. This is perfectly put Trevis. As so many of the symptoms of MS are, by their very nature, vague and difficult to describe and pinpoint, it can be difficult for non-sufferers to understand the experience. Sadly, this goes for friends and loved ones as well, who might think that you're faking weakness, lack of balance, memory problems etc...

  12. Good post. I have fibromyalgia and another illness and I have had the same thing, a lot.