Words on Life with an Invisible Illness

The feeling of separation that comes, from not being able to be out in the world in the way you would love to. Your heart yearning to be able to live freely, without the crushing exhaustion or the payback that comes from taking that one step too far.

The uncertainty that comes with every glimpse of a good week, never quite knowing when the next crash will come. The tightrope feeling. Trying to push it to the back of your mind and hold on to hope. Presence and mindfulness being your saviour so much of the time.

The feeling of life being on hold. You embrace each day and are grateful for the happy moments that come and the countless blessings you do have, but in so many ways life is on hold none the less.

The empty space in your life where your career once was. The ambition inside of you, a simmering flame. Still there, but dimmed by the overwhelming healing journey that consumes so much of your life. Missing that drive, that liveliness, that contribution to the world and purpose. The wonderful feeling that comes with supporting yourself financially. The independence.

The deep longing for a relationship, for children and a family of your own. That dream seeming so far away although your heart hopes that maybe it’s closer than you imagine. Not having the physical strength just yet to step into the dating world, having to trust that the universe will connect you with your soulmate when the time is right, yet missing that sense of masculine connection so much.

Misjudgments from people. Not intentionally, but because to an outsider the whole thing can be confusing.

People find it easier to comprehend what they can physically see.

Social media amplifying the misunderstanding. Glimpses of smiley days and happy moments. The hours spent resting before and after seemingly small outings never shown. The invisible symptoms and blurry vision that are a constant companion hidden behind your seemingly healthy external appearance on the days when you have stepped out of your house, not visible to others.

The embarrassment that comes with cancelling plans, visits from friends, sometimes the tiniest of things, yet again. The having to go and lay down and close your eyes in the middle of a friend coming round to visit. The zoning out mid conversation or forgetting words. The sinking feeling that comes when you are asked the ‘what do you do?’ question … if you ever happen to be out in the world long enough to meet someone for the first time.

The millions of things it takes to keep afloat.

The supplements, the excessive amounts of sleep, the endless practitioners and specialists, none of it really noticed by anyone else, but such a huge part of not completely going under. The pain and exhaustion or days unable to move, the months spent housebound and living a life completely trapped in your own body, hidden. The days when your own face is unrecognisable. Always hidden.

The frustration, the tears, the uncertainty. The having to be your own expert and find your own way to begin to put together the jigsaw puzzle of your healing journey. The endless abnormal results, the numerous issues inside your body but the confused Doctors who don’t really know what to do next. The aloneness and feelings of abandonment that come with that.

The exhausting feeling of having to keep picking yourself back up after being knocked to your knees one too many times.

Too many times crying on the kitchen floor. Not knowing why you end up on the floor, but you do and you have and you probably will again. Those periods of time feeling like you literally have no strength left, physical or emotional. Wrung out completely, but having no choice but to carry on. Somehow the strength does keeps on coming from somewhere, it always comes back. I think hope keeps that alive. And love.

Taking one day at a time. One step. Baby steps. Lifting your face to the sun when it comes, and filling your world with self compassion and surrender when the clouds float over once again. Being so grateful for the lessons that have come with all of this, the growth and the self awareness. The appreciation for the small things.

Trusting the universe has your back. That eventually, things will be okay.

Holding onto faith.

Always

These words came to me just before bed on the evening of the Summer Solstice.

Sometimes I get the urge to just pick up a pen and write, and for me this often happens at the end of the day or during meditation. I think it’s when a space is created in our minds away from the distractions and busyness that there is room for things to flow, for words to come and feelings to surface.

When I write in this way it is as if the words come through me rather than have any kind of thought attached to them. These words were those kinds of words… raw, unedited and from the heart.

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Disclaimer: This Website and all the information which it contains is based on my own personal experience and health journey which I am sharing for educational and informational purposes only. Please consult your own doctor or healthcare provider to determine the best course of treatment for you.