I think it is important to highlight this week. Why? Because it is deeply important to make the invisible feel visible. Society as a whole is extremely judgemental and are quick to jump to judgements.
She smiled, so she is fine.
She is out and at the shops. So what's the problem?
She looks nice and happy. So why does she say, she lives in loungewear & is lonely.
We are quick to judge. Rarely looking further than skin deep. Often it is because people are fearful, people tread on egg shells (JUST INCASE). Never realising than their ignorance & dismissal does more harm than good.
On the other hand we act like we are 'functioning', which believe you me, is a FULL time job in itself because we want to live up to people's and our own expectations. We are used to being active, successful, driven and bubbly. We mourn and grieve that person everyday and cling to everything and anything to keep hold of anything that is left. People think we are so focused on our health, all we talk about is hospital appointments, pain and suffering. Pitying ourselves. Gosh, sometimes you just want to trade places with them, so they can see clearly. You get angry and frustrated at the world for adding more pressure to your already overwhelming situation. You feel as if you are sinking, drowning with no lifeboat coming to rescue you.
I thought school was HARD. I never really fit in, I was always the outsider, the quiet one and some can say the invisible one way back then. If that is the case why aren't I used to being on the outside? Wondering how to be heard?
I realised long ago that sometimes fitting in, isn't the key to mastering everything. The key to mastering everything is standing independently, knowing your worth and celebrating YOUR successes. I used to be embarrassed and would dismiss my achievements because I felt it was cocky, over-confident and I never wanted to make ANYONE feel less of a person if I had achieved a win and they hadn't. I always made a point of highlighting the good and turning a loss into a secret win. It is so weird how we would help others in this way without even thinking about it. Still NOW to this day! I SPEND hours creating content, looking at ways to improve people's lives, helping others, emailing, messaging advice but when it comes to myself I devalue my fight, my strength, my work. I feel embarrassed and have low self-worth. I have so many dreams and goals but health really does get in the way and although publicly, as we all do, we put on a front so people don't question it. They just make digs about your life, how you handle yourself, your situation and the work you do. Because they see you for 2 hours every six months, you did your hair and your make-up, you looked ALIVE so why on Earth can you not do a 9-5 job?
You walked a little so why do you need a wheelchair sometimes?
You are out of the house, so why say you are housebound?
You have written two blogs and 40 emails, So why can't you work in an office?
You are to skinny, you need more meat on your bones, what is your problem?
People don't realise that although these sentences take a second to say, they eat away at a person for a lifetime. They cut like knives and leave scars that never heal. Sometimes I wish I could exchange our bodies and fire these questions back at them to see how distressed it would make THEM feel so they could understand.
Knowing these comments aren't worth our time and effort is hard. Shake off the negative, BOY we wish we could do. But we can't unhear things, we can't change our DNA or rewire our brains when it comes to how we process things.
I used to run through all these type of questions and answer them all, feeling as though I had to give them an answer back as proof. I would be honest:
- I do need the wheelchair for longer trips, my symptoms are unpredictable and EVERY day is different. It needs to be in the boot travelling with me INCASE. What I really thought was: 'You just see a girl, stood in front of you who has walked 20 yards from the car to the door and you think I am pain free and fine. She is 25, what is moaning about, she wants attention!
- Yes, thank goodness I am out of the house. Four walls drive me insane. I can't drive however, so yes I spend 90 per cent of my time in the house and that is why all my work is home based. What I really wanted to say was: 'Yes I am like a prisoner in my own home, I can drive but due to my symptoms my doctor now doesn't allow me. That means I have little freedom when it comes to getting out of the house. SO YES, this is like a vacation for me. '
-I WISH I could work like everyone else and work for outside of the home. I have to pace my days and every day is different due to my health & symptoms. So I could never mess a company around because of my health in this way. What I really wanted to say: 'Please come and manage HEALTH, LIFE, FUNCTIONING, AND THE PROJECTS I have taken on. They aren't just physical but emotional & mental too. '
-I have to be so careful now with my intolerances, anything can cause me a massive blip and affect my health. I am trying to stay stable. Evrything has to be plant-based and I have to stay away from any inflammoatory foods that may also cause issues. What I really wanted to say was: 'PASS ME THE PIZZA, THE CHOCOLATE & THE ICE CREAM SUNDAE.... I MISS THEM SO MUCH!'
I am slowly reaching the point where I just have to keep faith IN MYSELF. I don't NEED to explain or waste energy on 'proving' to people what I do, my situation, my outlook and how I cope.
I am learning more and more every day, we all are. We don't have the magic answers, there isn't a recipe that works for everyone. We are all unique with our own battles. Some may be more visible than others but they aren't less soul-destroying.
I know.. MYSELF. I KNOW Sophie Ward. I work as much as I can and would DO SO MUCH MORE if I could, I push myself often too hard and even though I have my negative, angry & emotional days I TRY so hard to turn negatives into positives. We only get ONE life and although this wasn't my plan or the journey I wanted I have to make the best of it. I am not a saint or have nailed everything FAR FROM IT. I make so many mistakes, have faced failure time and time again but we have applaud our bounce back, the fight to keep rising and the strength to valuate yourself to someone who is being so negative towards you with grace TAKES GUTS.
More than ever this is a wake up call for me. That we have to live for NOW, not wait for tomorrow because tomorrow isn't a given. I want to get more chronic illness warriors out there exploring the amazing world we live in, learn and experience cultures, adventures and making memories because life is SO MUCH MORE THEN OUR ILLNESS, THAN THE FOUR WALLS and there is MORE to experience beyond our garden gate. That is my goal for Sophantastic Travel! SO, stand up and prove people wrong. Show your strength & know your worth.
We may be felt to feel invisible BUT WE ARE VERY VISIBLE.
Please choose your word wisely, kindness counts nothing but harsh words last a lifetime.
I hope you can all relate to this post but also that it empowers you to keep fighting & find some form of peace within yourself.
I am always here, and never hesitate to message me.