Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

'Be proud of who you are, and not ashamed of how someone else sees you.'


When you're diagnosed with a Chronic illness, you realise that a few things in your life will change:

1) You will lose some friends.

Some people just don't understand, and thats fine, they don't have to, but atleast you'll realise once they're gone that you can find people, or have people who truly understand you, your limitations, your accomplishments and will help you along the way. Don't mourn friends who leave you, instead rejoice those who stayed.

3) You will feel pain and fatigue.

Unfortunately to say, but this is part and parcel of having a chronic illness. You will wake up in pain, you will go to sleep in pain. Not only this but you will wake up tired, and even 12+ hours of sleep gets you feeling absolutely no where near awake.

I know, I have atleast 13 hours plus sleep, and still wake up tired, how ..? Who knows. And still wake up with a new symptom every day and have got to the point thinking, 'What next ..?'

3) You will almost talk yourself out of cancelling appointments hundreds of times.

Almost like me today, except not cancelling, but booking one. I have these things under 8 finger tips, that feel like chilblains, but don't look like them. Instead, there's purple/red spots, that feels like the skin is being ripped everytime I touch something, the pain at touching something, even typing is awful. This will last me around 2, maybe more weeks. Do I book myself an appointment with my GP ..? Or leave it till my next Hospital appointment in June ..? It's too trivial for a random Hospital appointment, so I guess i'll leave it.

4) You will lose money on unproven 'cures'.

£8 a prescription costs here, and even then will it work ..? I have read about people who have tried so many medicines, therapies, home methods and so much more and still haven't found anything that helps. Ive only tried 3 medicines so far, and only one has worked, no creams help, no natural remedies have worked for me. But heres to trying to find something that helps me, and many others, for the rest of my life.

5) You will almost cry daily.

Almost definitely, unfortunately with a chronic illness, no matter which one you have, depression is almost likely to occur, and I know a lot about this. Its bursting out into tears anywhere and everywhere. I did this recently, my mum asked me 'whats wrong ..?' My answer ..? 'I'm just not happy.' These feelings just take control and you have no other way of expressing these feelings other then crying, the thought that I have not even turned 20 yet and I will have this forever, what will my future be like ..? Will there ever be a cure ..? Probably not in my lifetime.

I am currently not in a depressive state, but it can be ever so easy to get back into one, even standing in the shower for too long and just thinking, dreaded thinking. I'm lucky to always have the support of my family who help me so much, but sometimes not even their support helps, and its up to you to draw yourself out.

6) Your friends and others will discourage you.

They'll get upset that you're cancelling plans, hardly speaking to them, or anything that reaches out to them. Which I understand is hard, but they need to know that we are very unpredictable, what is fine one day is hell the next, and this can all be determined by sleep, stress, and even general feelings and moods.

They'll ask why you can't do certain things or give a certain text back, why you're not your cheery self today and maybe even say some other hurtful things. Ignore them, they're not worth it, if they don't understand and you've tried helping them understand, then don't give them the time of day, its just not worth it.

7) You will doubt yourself thousands of times.

Its easy to do so, will I be able to do this ..? Actually no maybe I can't, and then you won't. Some things are guaranteed that you won't be able to do, but thats given with your illness. However, don't let that hold you down forever, you can get back up again and try and try again, if you have trouble finding the energy, then rest up, until you feel you can do even the simplest of tasks and do it, that accomplished feeling you get at the end will mean everything.

8) You will develop weird habits.

Couldn't be more true. I currently have a few (I don't think they're weird as of yet). Like for me, its waking up in the morning of a day I'm going out and I'll pick my clothes, try them on, change around 5 times, get ready and then put my winter clothes on, like scarf first, then coat, then gloves. Ive seen a few others who have habits, I'm just waiting to get the stage where they are weird and people are like whaa when they see me do them lol.

9) People will give you grief for no reason.

Its almost inevitable that people won't understand, and rightly so, why should they know how we are feeling if they hardly know us (like work colleagues, strangers, friends, and estranged family members). It is our job to educate them, and if they choose not to listen then move on, if they aren't giving you a time of day, then don't give it to them back.

10) You will lose hope before gaining strength.

The common thoughts come into practice like, Why me ..? What next ..? I know for me personally every Hospital appointment I've been diagnosed with something new, so really not looking forward to the next one. You'll think to yourself how will you ever go on ..? Will people understand ever ..? They will, but some won't, and thats expected. Don't hang onto those people, they'll only drag you down, instead just smile, don't agree, just smile, they'll get bored in the end. Someday, and this is a hope, that we will learn a few ways to control our illness, how to suppress a few feelings that bring us guilt, depression and even more stress.

11) You will lose many friends and maybe even family, but find others who understand you even better.

I know for me this is 100% true, I have found so much support online from others who suffer the same as me, being able to get help, but also help others on there is such a rewarding feeling. It really helps aswell when your GP has no idea what your symptoms are but the people online do, as they experience the exact same. You have no idea how uplifting it is finding people like this, feeling that you're not alone, and there is medicines, treatments and techniques that help them, even if it doesn't help you, atleast you've tried, it makes a difference.

Until next Wednesday,


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