Multiple Sclerosis, fake or not

Behind a window

We all know web pages stating what not to say to people with MS or how to be a friend to or care for a loved one with MS. In a perfect world, such pages should not be necessary, or exist.

Since my diagnosis over a decade ago, the world has moved into a realm where cynicism is king and reduced levels of empathy are preferred. There has been a marked shift in how societies treat those who deviate from the white-men-rules norm, where people who are ‘different’ and ‘not like us or them’ are being discriminated or shunned. Disability and body shaming is but a small part of that divide.

Sowing seeds of doubt

My question to you therefore is this: have you ever met someone who hypothesised that medically certified patients are not always truthful about their illness and its associated symptoms, despite the fact that the veracity of their condition has been repeatedly and extensively documented by different clinicians in different medical branches, by using an array medical tests, years of follow-up appointments, reports and letters?

I could, of course, keep adding questions like the above. Life with an invisible illness just asks to be doubted.

Perhaps the clearest of examples is this: if you have a neurodegenerative illness like multiple sclerosis where the uninformed mistakenly associate a wheelchair from the moment of diagnosis to the end of the patient’s lifetime depending on the time and type of diagnosis, there may be a tendency to doubt. “So, why, why are you still not in that wheelchair?”

Like you, I have been there. 

Imagine.

I am still not in a wheelchair.

The nerve of me.

How dare I still use my legs after 10+ years post-diagnosis.

(In the meantime, I wouldn’t wish MS upon my worst enemy)

Or, how brazen of other people with MS to have symptoms that are often too difficult to understand unless you have multiple sclerosis yourself?

So, let’s get serious about this

There is a difference between lying about symptoms if you’ve been diagnosed with a specific illness and between factitious disorder (formerly Munchausen syndrome and  Munchausen by proxy).

In a factitious disorder, people deliberately and consciously mimick or produce illness or injury or exaggerate symptoms or impairment to deceive others. People with the disorder go to great lengths to hide and continue their deception, even without receiving any visible benefit or reward or when faced with objective evidence that doesn’t support their claims.

Know the difference

You probably gathered by now that this article is about having a certified chronically illness with a matching medical file that is by now, bursting at its seams.

Even in the presence of a certified illness, think of a world where imaginary medical degrees would suddenly become the norm while the real deal suddenly lost all their value. You knew something was wrong before you sought medical treatment so you and your clinicians went through every test possible until you sadly were told you had MS.  You have every bit of official paperwork you need to ‘justify’ your illness when required. 

Along, however, come certain people who – imaginary medical degree stapled to their forehead – boast and conjure up a theory where you are not being truthful about your illness. However,  at the time of printing, OK Magazine explained why the backside of Kim Kardashian expanded in size, but forgot to mention all about brain lesions; oligoclonal bands in CSF; CN5 nerves and hyperacusis, just to name a few MS-related medical terms.

I love medical conspiracy theories, don’t you?

Of course, what certain people really mean is this, “How dare you fake having such a symptom?”

Or: “Stop complaining, you are not that ill.”

Do not assume, ask

The assumption that of the many invisible symptoms associated with MS, some can be faked – as if they’re digitally pasted on someone – is flabbergastingly prejudiced and foolish. It portrays a clear lack of understanding of what MS as a neurodegenerative illness is and what its impact is one those living with it.

Just to recap what MS is:

Neurodegenerative; 4 different stages; 50+ associated symptoms
Diagnosis: visible bright or dark brain lesions on MRI scans: active inflammation
Cause: unknown
Cure: none
Prevalence: 2.4 million people worldwide
Not 2 people alike in their illness pattern, symptoms and progression

Non-neurologist, good luck trying to find out what someone with MS is supposedly faking

What is more, when the veracity of symptoms are called into question despite material proof lying in front of them, people with neurodegenerative illnesses are shown an utter lack of empathy and respect when all they hope for is some normalcy in their everyday life.

Remember this brilliant bit of ancient Roman wisdom by Publius Syrus, a Latin writer born in 85 BC: “When we speak evil of others, we generally condemn ourselves.” Ergo, each time someone with a chronic illness or disability is called out for not seeming what they say they are, just call them BS.

I ♥ you but need you to understand me

People who treat you as a lesser person are not the type of friend or family member you should allow to remain in your life. You are worth so much more than that, so much more than that. In giving you this advice, I must remind myself of the very same wisdom.

My self-preservation comes in this form: “Aw shucks Willeke-Maya. Billie, you big Bundle of Fluff, just keep being an optimist, at least until NASA starts moving animals in pairs to Cape Canaveral. Then you still have time to cry.”

So, be an oddball.

Be curious.

Be unconventional.

Cry when needed when it gets too rough and when nobody seems to understand you.

Love yourself, even when your disease process, outlook on life and appearance has changed over time because of your illness.

You know you are real. You know your illness is real. You goddamn know the physical pain you have learned to hide even when it feels like being hit by flashes of lightning. You know the lengthy period it took to be diagnosed with MS. And you know that you are 100% precious. Don’t let anyone steal your sunshine.

More on this

Supporting someone with MS, UK MS Society

Caring for a friend or a loved one with MS, Verywell Health

How to be a friend to someone with MS, Everyday Health

At a Loss for Words: What Not to Say to Someone Living with MS: These 5 Bloggers Tell Us What You Shouldn’t Say to Someone Living with Multiple Sclerosis – And One Surprising Thing You Should (includes a piece written by myself)

11 Things you should never say to someone with MS, HealthLine

Factitious disorder, Mayo Clinic

Signature Willeke-Maya


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2018 Winner Best Blog Post with ‘3443 Needles’, Blog Awards Ireland, Ashville Media Group, Dublin, Ireland

2018 Winner Best Blog Post with ‘3443 Needles’, Blog Awards Ireland, Ashville Media Group, Dublin, Ireland

◾ MyTherapy: Multiple Sclerosis Blogs: 10 of the Best in 2019
◾ Ireland Blog Awards: Finalist 2014, 2015, 2017
◾ MyTherapy: Best MS Blog for Simplicity 2018
◾ Everyday Health: Top 10 MS Blog of 2018
◾ Feedspot: Top 50 MS Blog 2017, 2018, 2019

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2019. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and irelandms.com with appropriate and specific direction to the original content.

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