Defined by myself, not my illness

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My name is Billie. I am a daughter, sister, aunt, niece, sister-in-law, cousin, granddaughter and simply a part of a special family.

I am, however, also an individual.

I am passionate, caring, goofy, alternative, tenacious and inquisitive.

I love writing, quiet spaces, history, psychology, helping others, the English language, photography, dogs, laughing, reading newspapers, animals, books, rugby, watching television and coffee.

I studied library sciences, and counselling with merit. I loved working hard, I loved working, period.

I write my own blog as well as on other people’s blogs. I am a volunteer spokesperson for the Irish MS Society, and advocate better neurological services in Ireland in general.

As you can tell, I have abilities that strengthen me and drive me forward. I also have (dis)abilities: severe bouts of pain and fatigue, which I bent into a positive writing tool for others to lean on. My limitations serve as other people’s motivation. Their motivation became my inspiration, ability if you must.

I am an individual with many things to cherish.

In 2005, I found out I have multiple sclerosis, main symptoms severe fatigue, neuropathic pain, trigeminal neuralgia as well as other symptoms. End date unknown, and in the meantime I live in hope.

It’s a much-talked about, ongoing topic for people with multiple sclerosis. Every single one  of us has lived the same misunderstanding, ignorance and irritation, which was once again talked about at a conference in Lisbon. If you have an invisible, chronic illness, it’s never too far off your daily life. What others might perceive as you being overly sensitive, you know all too well what you are going through is real. However, despite the impact your illness has on your daily life, be mindful, but not defined by it.

People who know me, know the saying I live by. “When I go outside, I always make sure I don’t look ill.” Fake tan to hide dark circles under my eyes, hair nicely cut, contact lenses, lots of medication that keeps me up for now, and even more rest before and after events. Pride runs in my family from my grandmother to my own mum to myself. Because of it, I have seen doubt in people’s minds when I tell them I have MS, or disbelief because I cannot do the things I used to do anymore.

Still, I am an individual. I am not my illness. Not too long ago, I said “I am not defined by MS. I define myself instead.” I continue to live by that rule as a strong person, and I always will.

I hate pity. As soon as I sense as much as one syllable that resembles pity, I say that I am just fine, even when I’m falling over from pain and fatigue. I don’t negatively label myself “a patient, sufferer, survivor” or other words that might weaken my individuality.

That said, I also hate the sound of house alarms, screaming people, mouldy, stinky cheese, people never saying “thank you” or “please” and cold toast.

The way I prescribe having MS, is like this “I have MS like I have shoes, boots and slippers. I put them on or off, store them or throw them away altogether. That is what MS is to me. Something an outside source might impact, but never the defining part of my wardrobe.”

I am not my illness, I am an individual.

If/when I advocate for others with MS, or if/when I’m  asked to join conferences, meetings and anything else to help others with MS, I am not letting my illness consume me. When pain, fatigue, early retired and MS doesn’t define me, lobbying for others becomes easier as time goes on.

We will simply not be labelled. We use what we know best to help others on the same path of experience, of life. A lot of people with invisible illnesses have had people doubting them. My answer is “Do you really think if there was a chance of a cure, I would not want  that cure? Do you really think I chose this life, this illness? I just want to make the best of what I have, of what was imposed on my brain and spinal cord against my will.”

What people think is their problem. When they blame you, take your identity away, it says a lot more about them than it says about you.

In the end?

MS is not our fault, we are not our illness and it definitely does NOT define us. What we have done is ACCEPT our illness in our lives.

We are who we are. It is not a contest.

We’re much more than that.

We are individuals. We are real.

© WVE and Ireland, MS and Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

5 Comments

  1. Declan Groeger says:

    I can understand the fake tan. I love the sun not only for its Vitamin D powers but also ’cause it gives me a bit of colour and takes the winter pallor away. Real me don’t do fake tan, I think

    Liked by 1 person

    • Billie says:

      Thanks for commenting Declan! When I don’t wear fake tan, I honestly look like a ghost… nearly-black rings under my eyes, pale and just very sickly. Kids in my housing estate once called me a zombie or a ghost… don’t want to scare kids :) And yes, the vitamin D is so vital for us, but if I’m exposed, I tend to get sunburned very quickly these days. But yes, real men don’t use fake tan :D

      Like

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