To the Person who doesn’t ‘BELIEVE’ in my Illness.

 

dontbelievemeillnessThis year marks an official decade of having Rheumatoid Arthritis. Not something I will be going out to celebrate but still I am proud that I have gotten through the last 10 years.

I have met many people along the way, people who suffer like me, people who don’t know or care about my illness, those who want to understand but can’t, those that do everything in their power to be there for you and then those who don’t really ‘believe‘ in my disease.

Sorry but it’s time I said something…what does that even mean? My disease is not a fairy you don’t have to believe in it and clap your hands for it to be real.  Or rather is it that you don’t believe that it affects me the way I claim it can?

You see me smile and laugh, I get up I go to work, I don’t spend every minute of every day depressed or crying so it must all be in my head. Or maybe ‘it is just not that bad.’

I get not understanding what is going on with my body , hell I don’t really understand it but that doesn’t make me a liar and it doesn’t make this illness disappear.

I feel each time you roll your eyes into the back of your head when I talk about my disease. I feel your condescending tone when you explain how ‘easy‘ a certain task is. It is not easy for me. Every day brings new challenges that my body doesn’t seem to want me to overcome.

I have spent a considerable time of the last 10 years wishing it is all just my imagination. A bad dream, a storyline or a game I had gotten too wrapped up in. Sadly for me this is not the case, it is very real and I don’t need someone to pinch me to prove it’s not just a bad dream.I would love to come to the realisation that I was in some Sci Fi novel where the monster possessed by body causing me pain and I only had a few more chapters to endure and it would be slayed and I would go back to my life. But this isn’t a book or a movie this is my life. I have to live it every day, in pain.

Honestly if you don’t or can’t understand just how much this affects me and others like me I get it. I don’t hold that against you. It’s something I am still trying to get to grips with a decade down the line.

But don’t insult me by saying;

‘I don’t believe it’s that bad’.

‘I don’t believe it effects you that way.’

‘I don’t believe in it.’

This isn’t Santa or the Loughness Monster. My Arthritis is not something for you to debate. It is fact. It is an incurable fact of my life and whilst you might not believe, I have no choice in the matter as I live with it each and every day.

 

You don’t have to believe in ghosts, magic or true love but my disease is not up for discussion. Bear in mind this is not me telling you not to have an opinion, not to have a joke or not to ever doubt that sometimes I am a lazy cow (Cuz I so am) but it is me telling you to get a grip on reality.

I can’t clap my heels three times and wish it was all ok, well I can but nothing will happen. A handsome prince isn’t going to kiss me and cure me so that we can live happily ever after. This is not a Disney Fairy-tale this is life and frankly whether you believe or not it doesn’t make it any less real.

 

Invisibly Obvious : My Invisible Illness and Me.

invisible_by_pyroin-d7sxmblI sat in the Doctor’s office while the nurse repeated words like ‘manage, lifelong and chronic’ , but at just 15 none of it sunk in and I had no idea what all that really meant. I expected to be medicated, sent home with a few days off school and I would feel better in a week or two and my life was to go back to normal. Little did I know that was far from the way things were going to be.

Normal is a relative term and suddenly my normal was sleepless nights, needing my younger sister to brush my hair and dress me and for my friends to carry my school bag off the bus for me. My new normal was being in agony for a weeks after one fun filled weekend of shopping and movies with my friends. My new normal was anything but normal for my peers.

People do not understand the impact Rheumatoid Arthritis can have on your life, they hear arthritis and assume you have a bit of an ache in your knee and are a hypochondriac. RA is an inflammatory autoimmune disease which affects the joints in your body  but also causes chronic fatigue , pain and discomfort and limits your mobility. In other words it is your own body attacking itself and causing inflammations to heal the body however the problem lies in the fact there were no wounds to heal in the first place.

The pain is one part of the disease that can certainly test you and push you to  breaking point but it is the lack of true understanding from others that can be the most painful. Rheumatoid Arthritis is not something that we made up in our heads or something we exaggerate. We smile and say we are fine and then we cry in agony when no one is looking  because we do not want to bring down those around us. So we play a great game of hide and seek as we shelter you from the pain we are in.

It is the simple tasks that we once took for granted that affect us the most such as getting out of bed in the morning. I doubt anyone really does this at ease but now I need to prepare myself as my bones ache and creak as I sit at the edge of the bed. I count to three in my head and take a deep breath as that is the little routine I have made for myself to ease the pain of the first movements of the day.

Everything is different now , everything is more difficult now, from brushing my teeth to carrying the shopping in from the car. The little things people do without a second thought and in mere minutes can be a real struggle for me and during a flare up quite time consuming.

People don’t see a sick person though, they see a young woman who should be ‘well able’ for these easy tasks. They see someone who is just lazy and can’t be bothered. I may not have a wheelchair or a missing limb but my body does not function as it supposed to.  I have my body but it is broken, I am broken.

My illness is invisible to the naked eye it seems but really it just takes some time to open your eyes wide and see. You cannot possibly know what every person you encounter on the street is going through and no one could expect you to. But  a friend, a colleague , a loved one has the capacity to see what is going on behind our fake smiles, and lies of ‘I’m Fine’. You just have to look hard enough and when you do my invisible illness suddenly becomes glaringly obvious.

 

This was originally published in The Clare Champion a local paper in Co.Clare, Ireland.

 

To the Person Who Thinks I am Lazy

To the person who thinks I am lazy

To the person who thinks I am lazy, this is a letter for you, in the hopes that after reading this you will get a little insight into how that makes me feel. Firstly I must say It is probably not your fault, if I am entirely honest I might have made the same judgements as someone just like me before I was diagnosed. But then again I was a naïve teenager, still learning about the world and the people in it when I was diagnosed.

This is not a post to give out to you or claim that you are a bad person or even to claim that I am never lazy. At the end of the day, I am a human being and from time to time just like you I am lazy. But for the most part just getting through the day takes more energy from me than climbing a mountain might for you.

I know you may read that and think ‘what exaggeration!’ and roll your eyes but it is true. It’s ok that you do not completely understand. In truth I hope you never really do as that would mean you would have to go through the pain and exhaustion I do each day.

This is not a pity party either or a need for sympathy or attention. All people with a chronic illness want is understanding. Even if you cannot truly grasp just how difficult a regular day may be for us we hope that you grasp the fact that we are in fact not lazy. That we want to work, that we want to play with our kids, go on long walks, attend every event we are invited to ….but whilst we want all that, sometimes that is just not realistic on a daily basis.

Those with a chronic illness who are able to work count themselves lucky, those who has an understanding manager and colleagues are even luckier and those that have a family who is supportive feel as though they have hit the jack pot.

A husband who understands why he has to cook the dinner AGAIN because we are in too much pain, a manager who gets that we wish we were at work and knows that we are important to the team despite our struggles, friends who don’t make you feel guilty that you can’t make it out to see them after all, this is all we want.

We are not lazy but rather in too much pain to get of bed, too much pain to get dressed or brush our teeth. We are not lazy but sit at home willing our body to move at ease so we do not have to feel like we have wasted an entire day doing nothing.

But what you and I must come to terms with is that on those occasions we are not being lazy, nor is it a waste of a day doing nothing. It is a day our bodies need to recover, to revive and to get us through the rest of the week. A day that is unpleasant for everyone involved but that means we are re charged and capable of more in the long run.

We are not lazy, we are just broken, we need more time to re charge then others and we wish it was different too. We want to have a good night’s sleep and feel refreshed ready to take on the day. We want to wake up and the only pain and discomfort we feel is a little indigestion or a period cramp.

To the person who thinks I am lazy, I hope you never have to explain yourself like this to anyone.

I am proud of myself and those around me whom smile every day despite the pain they are in. Those who try their best to meet their goals and life a ‘normal’ life. I admire each and every one of you no matter what your chronic illness whether it is much worse than mine or much milder.

Each day is a battle, but you know what sometimes the illness isn’t the biggest battle, instead it is the people who refuse to at least try to understand.

Just remember you cannot always see someone’s pain, but we can see your judgement.