Tuesday, 10 September 2019

Seven incredibly important things you must know if your friend has a chronic illness...

When it comes to confessions I’m almost 99% certain that I’m not going to be alone when I go ahead and openly admit this... 

...So the thing is: I often really struggle to be completely honest about how I'm feeling. Whether that be opening up to family, close friends, or even acquaintances. It just seems so much easier to reply with 'fine thanks' when asked how I am, rather than the real answer- the real answer being I feel absolutely dreadful most days thanks to hidden illnesses. 

The trouble is, trying to get others to understand my physical invisible illnesses and how they impact my life can sometimes seem like mission impossible, and therefore, I put it off completely.

I’m fine usually equals ‘I’m on the verge of collapsing, but I don’t want to tell you this in case you think I’m complaining’ OR I’m fine may equal ‘today is a really bad day, but I’ve got to pretend I’m okay otherwise the tears will start aggressively falling ’. 

...Do you notice the pattern? I’m fine is usually code for ‘I’m really not fine’. 

So let me put it very bluntly: it actually crushes me inside that I have to admit to others that I feel unwell every second of every single day and therefore have to miss out on so many social gatherings/life in general. 

Which is why I want to write an open letter where I can be 100% honest with my friends and family, and hopefully a few more of you in the same position will find it helpful. Whether it’s your partner, your best friend or even just a neighbour, here’s a few things we need to tell you...

1.) We aren’t tired, we’re crippled with fatigue... 

Now forgive me if I’m wrong but I’m guessing that you may often wonder what we mean when we mention that we’re too tired/exhausted to even get out of bed? Maybe in your head you think to yourself “what do you mean you can’t just jump in the shower or make lunch, surely tiredness doesn’t stop you doing that?” 

Here’s my explanation: There’s a huge difference between tiredness and feeling sleepy and actual full blown fatigue. Fatigue is crippling, it's almost indescribable- the exhaustion washes over your entire body, so much so that it often leaves you unable to move, talk and focus properly. 

On a very bad day my entire body and muscles feel heavy, as though I have weights trying to pull me down. I also have a fuzzy brain fog, unable to think straight, and recall basic words kind of feeling. It’s that very same awful feeling that forces me to crawl on my hands and knees down the stairs, with stops in between for tears as I haven’t got the strength. 

Believe me when I say that I wish I was just ‘I’ve had a long day at work’ kinda tired! 

2.) Our health is the unreliable one, not us...

We’ve just cancelled important plans to catch up with you for the third time this month, we get it, you’re slightly annoyed at how unreliable and flaky we come across. Don’t worry, we understand that it can’t be easy having a friend who always cancels, but please believe us when we say that we’re just as frustrated and annoyed about having to miss important plans as you are, trust me. 

We care, we do so desperately want to see you and we always feel really guilty that we’re missing out on precious time together. Please always remember that our health is the unreliable one, not us. 

3.) Good days and bay days, here’s the score...

Another very misunderstood aspect of chronic illness is the 'good day', 'bad day' side to the illness. To explain this very briefly all this means is that on a 'good' day you perhaps won't be suffering as bad as you normally would, the symptoms are very much still there in the background and a good day for us would be a really awful one for you, but we push on and make the most of our day. 

A 'bad day' means that a sufferer will spend all day in bed feeling extremely unwell, unable to much at all- your usual symptoms are exaggerated 100x more on these days. 

So yes, even though we can have better days that unfortunately doesn't mean that we will be able to go out everyday. And the days we do manage to get out of the house have probably taken a lot of resting beforehand to be able to do so. Always bare this in mind, if we did something last week for instance we maybe won't be able to do that again the next week- everyday is different! 

One day we can enjoy an afternoon out, and another we can’t move...and no, we don’t understand how that works either, we’re just as confused. 

4.) We really don’t mind if you can’t think of anything to say when we’re struggling... 

Your presence is the best gift you can give a friend who is in pain. You don’t have to fix us, just simply be there. A hug, a shoulder to cry on, just a listening ear, it means EVERYTHING. 

5.) Tiny everyday things are HUGE to us, and here’s why... 

You may also not be aware that we continually have to make decisions every hour of the day due to our ‘faulty energy battery’. (The kind of decisions you wouldn’t think twice about’.) 

We tire very very quickly so think of us as an iPhone battery, we start most days at only 10% and that same 10% has to last us the ENTIRE DAY. Now try to reply to emails for an hour, scroll insta for 15 minutes on your break, take photos, snapchat video your friends with that same 10%- and no once it’s bleeping 1% you can’t reach for the charger- you’ll simply have to prioritise which task is most important. 

That’s us every single day, with 10% worth of energy to deal with and we have to clean the house, eat, socialise with friends etc etc. Mission impossible, some days all we’ll simply be able to do all day is eat and that’s it... LOW POWER MODE. These are the decisions we have to make daily, carrying on with our day as usual is not even an option when you start with so little strength. 

6.) We won’t always talk about our illness but that doesn’t mean that we aren’t still suffering on a daily basis...

Half of the time we really are award winning Oscar standard when it comes to acting like we're okay. However, this doesn't mean that we actually feel okay, we won’t always show our suffering, sometimes we just want to feel ‘normal’ for a couple of hours, but if we do mention how we’re feeling unprompted then know we must be feeling really bad. 

7.) We can’t simply push through 

Last, but certainly not least: we try our absolute best to live as much as a normal life as possible every single day. The most hurtful thing anybody can ever say “yeah, but have you actually tried to get out of bed?”, to put it simply if we’re struggling, doing so will make our health 10x worse. There’s no pushing through it like you would a usual cold or stuffy nose, we have to listen to our body and rest. 

Phewwww, so there we have it, that ended up being a lot lengthier than I’d planned but I really hope that all of the detail will be able to help you all understand even more? There’s to be no shying away from the fact I’m unwell, no more pushing through the pain, just total truth right here. 

Please please share with all of you friends/family/work colleagues if you find it hard to personally explain your chronic illness, I hope this helps lots of you to understand our hidden pain and suffering world a little more? 

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