Tuesday, 27 September 2016

6 years on - 6 things I've learnt from my Invisible Illness

6 years ago I was diagnosed with Neurocardiogenic Syncope. An invisible and chronic illness that is part of the dysautonomia family which in short term is a general term used to describe the breakdown of the autonomic nervous system. Symptoms are wide ranging from patient to patient and can include problems with the regulation of heart rate, blood pressure, temperature and perspiration. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope) weakness and cognitive impairment. I was first diagnosed at the age of 20 after 10 years of doctors, questions, tests and panic after a series of worrying faints and seizure like activity.  


Why am I telling you all of this? Well this week marks Invisible Illness Week, a cause that is close to my heart. The weeks main aim is to raise awareness for invisible illnesses and to remind people that just because you can't see someone is sick it doesn't mean they aren't.

Today I wanted to write a little list of things I've learnt since getting my diagnoses and also raise a little bit of awareness about my condition and others struggling a silent battle every day. 

1. This is a different life than you planned, but it doesn't have to change you. 

When you are first diagnosed, a lot of things automatically get taken away from you. Things such as driving, exercise, the knowledge that you will definitely have children may all come up for question and this can leave you feeling understandably scared. Since my diagnoses I've started to live in something I call my 'new' normal. So I can't have a shower without the help of a stool or sitting down and I can't stay out till ridiculous hours of the morning like my friends without severely paying for it the next day, but that doesn't mean I have to lose who I am. Try to find new hobbies that you enjoy which fit around your illness and you'll soon realise your diagnosis doesn't own you. 

2. Not everyone will understand. 

But you don't look sick? You're too young to be sick. "Oh I'm exhausted too." All things I've heard on more than one occasion when I've been talking about my illness or mentioned that I'm feeling unwell. Sadly for a lot of people seeing is believing and unless they can see an arm hanging off its very unlikely that they will always believe the extent of what you're going through. I once had a long chat with my great aunt and she told me that other people don't matter, as long as I know my own limits and I'm taking care of my personal health, what do other people's opinions really matter? 

3. People will try and tell you WHY you are sick. 

You look tired, are you sick because you're tired? Did you eat enough? Maybe you need to eat? No, I'm just ill! It took me a while to get a few people to understand this, as if people know the cause, they think they can create a solution. The sad thing is with chronic and invisible illnesses is that usually they are life long and whilst they can be managed, they are usually unable to be cured completely. So as annoying as this can be, I've learnt to let these people try and help, it makes them feel better and  like they're doing something positive, even if you still feel rotten afterwards. 

4. Learn to live in the moment. 

When you don't know if you will wake up feeling well or like you've just been hit by a bus, It's good to learn to live in the moment. Whilst cancelled plans can be frustrating, learn to live spontaneously and make plans in the spur of the moment. Whilst I understand that sometimes medication and equipment might need planning for some people, if you're having a day where you feel well, plan an adventure and appreciate the day. 

5. Grow a thick skin, people will say mean things. 

Knowingly or unknowingly, people in your life will sometimes make comments which hurt. You can take these comments to heart or you can learn to take them with a pinch of salt. Anytime someone says anything hurtful or a little close to the knuckle now I offer them the line "by all means please take this for one month and then get back to me" and it seems to work. Whilst you shouldn't have to fight your corner, sometimes people need educating, so do your bit for the rest of us and teach them why their comments are hurtful or bad. As for dealing with them yourself, know they often come from a place of miseducation rather than wanting to be hurtful. 

6. Take care of yourself. 

Don't beat yourself up for those days spent in bed. You aren't being lazy, you are recovering and giving your body the love and attention it needs. Taking care of yourself is not something to be ashamed of. You sit back enjoy that well deserved day in bed! Need a nap when you get back from work? Nap away!! 

Do you suffer from an invisible illness? What are your top tips? 

Until Next Time 

B X 


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8 comments

  1. Thank you so much for this! I've been struggling for 17 years with NCS and was just now informed that I probably wasn't going to "grow out of it". It's been hard trying to raise my kids while feeling so awful, trying to cope after finding out about the elevated Alzheimer's and dementia risks because of this horrible sickness. I've never responded to medicine or any kind of treatment, I just have to deal with losing consciousness 50+ times a day. People don't understand how annoying it is to hear "oh you just need to take vitamins, cut out sugars, get your heart pumping more, etc". People don't realize we struggle with memory loss, not being able to put together simple sentences, words escape us, sometimes I'm so exhausted I can't speak at all, sometimes my hands don't want to work, I can't even grocery shop anymore. People don't understand what it's like to look okay from the outside while having to use a motorized cart at the store just to get shopping done. People don't understand the dirty looks. But if I walk with a cart having to sit down or literally lay down in an isle, people start saying "if you're really that sick, why do you even get out of the house?" I want to feel normal. I want to be able to go to target and shop and feel normal. I want to be able to talk like a normal person, I want my brain back. I want control of my body. I want to hike and play with my kids and be able to go to the zoo and the park and theme parks. People don't understand. But you do, because you live it. Thank you. I hope we find healing eventually.

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    1. I'm sorry to hear you're feeling this way. Sending you all of the strength. I love the saying "you were given this life to live because you are strong enough to live it." It gives me a boost on down days, but know we all get them and it's perfectly OK. It's a misunderstood and frustrating life we lead. Xxxx

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  2. From a fellow NCS Warrior! Thank you for writing this!

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  3. Thank you so much for this post, it's very encouraging for us all, especially on the bad days. Some times, when I get tired after work and I have to lie down,I feel like I'm just being lazy. But I do have have to remember if I don't, I'll just pay for it later.

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  4. this was so exactly how I feel ...and I'm saying that from bed trying to get up ... Thank you

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  5. Thank you for writing about invisible illnesses and for raising awareness hun. I have Ehlers-Danlos Syndrome, POTS/Dysautonomia and a range of other chronic, invisible illnesses and it's always great to see people talking about them (although not so great that other people are having to suffer too). The things you've learnt from being ill are things I can relate to 100%. Despite having a diagnosis and the knowledge that my genes are faulty, people still seem to think they know why I'm ill and can cure me! And I totally agree with having to learn a new normal and adjust to your new life. Sending lots of love,

    Jenny xx

    www.jaffacat.co.uk

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  6. I can relate to this so much. I was diagnosed with epilepsy when I was 21 after around 13 years of tests and appointments always resulting in scratching heads and no diagnosis. And when it finally came finding out what I was suffering with everything changed, I couldn't do things I wanted to or had to be super careful.
    And I still get the 'are you sure you don't just need to eat' if I'm feeling dizzy. I now just do what I can when I can, if it's a good day make spontaneous plans.
    I always make sure I have "self care" days, you literally need it, you need to rest and stop for a while or my body makes me regret it!
    I really hope you're doing okay ❤️

    Emily-May x

    www.theaurasoflife.blogspot.co.uk

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