Sunday, January 19, 2020

What it's like living with an invisible illness …



Throughout everyone’s life there will be times where you get “sick” and need to spend a few days in bed with the flu or if you are unlucky enough you may need to spend a few nights in your local hospital but for most that’s where it ends, you get better, go back to work and live your normal life. When living with a chronic illness it’s the opposite and probably one of the hardest things to explain to people as technically we never get better we just have days/weeks or months that are worse than others.

For example, waking up with a headache every day for me is the new normal, if i'm tired I’ve got no hope in reading emails at work and this new burning sensation in my forehead seems like it’s here to stay. We then have times where we will experience a relapse or flare which is when our medication decides it doesn’t want to play anymore and our symptoms flare up to a point that it makes it hard to do the day to day tasks and those are the times we need to accept the fact that going into hospital is probably the best place for us to be as if we don't do anything to settle it down its only going to get worse. At this point we will usually be given stronger medication, potentially have another MRI and have a million blood tests so then we can try new techniques to help calm down the flare and restart the process of controlling our immune system that has a mind of its own. This is where is gets confusing to most people as when we get out of hospital everyone assumes that we are 100% okay and back to normal but 9 times out of 10 this isn't the case - we are just well enough to go back to OUR normal.

I commonly refer to my condition as an invisible illness as to most people that’s what it is and it’s also really hard for most people to understand that even though we look fine we have days where we may actually be really struggling but we don’t have a choice other than putting on our happy faces and just carrying on. Whether you have an invisible illness yourself or know someone who does, it will be normal to find yourself saying you are okay or all better when people ask how you are because trying to explain what it’s really like is normally more confusing than the conversation is worth. It’s not that we are being rude or trying to palm you off when you ask but when living with an invisible illness the best way to live life it is to accept it is what it is and just deal with it. If we were to constantly mope around and look at all the negatives we would get nowhere so sometimes acting like we are okay (or what we consider normal) even on days when its actually a struggle is just what we need to do.

Everyone’s coping method is going to be different and trust me the further you get into your journey you will find what works best for you. I’ve found for me personally writing these blogs and hearing other people reach out and tell me their stories really helps as it makes me feel like i'm not alone in this world of the unknown… 



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