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Do you feel sick of feeling sick?

Are you stuck thinking why me?

Is balancing what you want from your life and your health proving tough?

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Hi I'm Kate

Come and join me on a journey from Chronic Illness to Chronic Wellness!

Warrior, it's time to take back control.

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6 Things I Need You to Know About My Chronic Illness

Sometimes suffering with a chronic illness can feel pretty isolating. No matter how much care and love you get from those around you, it can be difficult for a healthy person to understand what it’s like to live with ongoing ill health.

So here is my open letter, an attempt to bridge the gap, an attempt to help those who can often feel helpless standing on the outside looking in, to understand.

1. I hate letting you down

(even though I might be the most unreliable person you know)

Despite everything I do to try and balance my lifestyle and my symptoms, to pace myself, to eat well etc. etc. sometimes my body just says no. When it does it usually means I have to disappoint someone in my life. Whether it means I can’t watch my sons football match, make drinks with my friends, can no longer accompany my husband to an event, or can’t make it into work, I absolutely HATE letting people down. But unfortunately that’s my reality, and far more regularly that I would like.

The only way to combat this is to commit nothing to anyone in the first place. No-one is ultimately let down, because no one expects anything. But to me this is just too sad. I want to be something to people, to do things for people, to help people and support them. Unfortunately the only way this can happen is that I have to repeatedly risk letting people down. But I can promise you, if it’s any consolation, it hurts me as much as it hurts you.

2. I’m putting a brave face on a lot of the time.

I know I don’t look sick. You may even see me laughing, joking, throwing myself into things with the best of them. However, that’s because I’ve made a decision to get on with things when I can, that if a jobs worth doing it’s worth doing well and with good grace. It’s easy therefore to perceive me as well a lot of the time, which is good, I don’t want your pity, honestly I don’t.

But if I give you a signal that something may be too much, that a task may be a stretch too far, it can be easy to assume this is an early indication that I’m starting to flag, rather than the nod that I’m actually about to flake. All I can ask is that you trust me, I’m more in tune to my health than your average zen master, and I don’t ask for help lightly, if i’m reaching out, I need your help, or at least your permission to stop.

3. I don’t begrudge you being sick

I hate the thought that my illness would lead you to hide yours, or to minimise your suffering because you feel guilty or fraudulent; because you know I am so unwell so often.

But in reality, if anything, my familiarity with illness only adds to my sympathy, empathy and care for yours.

If your body is unwell, reach out to me, I get it and I’ll do anything I can to make you feel better.

4. I desperately don’t want to be like this

There can be a perception of people with long term physical and mental health conditions that we just need to snap out of it. That we’ve given up and given in, and that if we just fought a little harder, a little longer, if we just tried something new…

I’m yet to meet a chronically ill person who enjoys it, wants it, or has entirely given in to it. I’m sure there are some out there, there are some of all types of people out there. But please be rest assured that if I’m in bed it’s because I can’t get out, if i’m not where I’m supposed to be it’s because I can’t get there, not because I’ve given up.

Of course there are days where the fight becomes too much, where I need an extra day to find the strength to keep fighting. The mental energy required for a daily fight for a normal life is too great to describe here. But even when I need that extra day I always pull myself back. I’m not weak and I certainly don’t want to be like this. In fact, who knows, I may just be one of the strongest people you know.

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5. I don’t mean to appear grumpy about your advice, it’s just I get a lot of it

If you’ve ever been pregnant you’ll know that when it comes to pregnancy and baby rearing, everyone has an opinion an idea and knows someone who’s done it/doing it better than you. Chronic Illness brings out a similar desire to share. Everyone knows someone who’s chronically ill and everyone wants to help you solve your problem, the problem can be when EVERYONE wants to share this well meant advice with you ALL of the time.

I spend half my waking hours reading research and books, consulting with doctors, natural therapies and therapists, working on my diet, meditation, routine, lifestyle choices etc. etc. (I could go on all day). That’s not to say that no-one has anything else useful to add. I have had some wonderful and life changing advice from people in the past that has lead me to make great developments and break throughs with my health.

However, there are times when that advice has been given many times before, when the implication is that perhaps I haven’t tried enough and there are times when I’m just fed up and let’s be brutally honest, feeling a little pissed off. I can only apologise that at those times I may not be as receptive to new ideas as I should. Just feel rest assured that any ideas and suggestions shared with love will always be received the right way.

6. Just because I don’t ask for help doesn’t mean I don’t need it

Before you say anything, I know. I know. I know. If I don’t ask for help, then I have no right to feel bitter or disgruntled about not getting it. And genuinely, I’m not. But I just thought it might be useful for you to know.

I’ll be honest, you’re stuck between a bit of a rock and a hard place on this one. Offer me regular help and I’ll likely refuse it and get frustrated, offer me too little and I’ll probably struggle to get by and possibly even get a little grumpy. What can I say, I’m like a chronically ill version of goldilocks, high on codeine and grumpy on pain, and I’m looking for support that is just right*.

*Right is defined by whatever is right on any given day of the week based on a combination of my mood, general wellness, pain and the weather. I withhold the right to change the definition of ‘right’ at a moments notice without due cause or formal instruction. Failure to meet the correct and most up to date definition of right at the time of interaction may lead to stropping, snapping, grumping or just general bitchiness, non of which can the distributor of such behaviour be held accountable for.

OK parts of this post may have descended into being a little tongue in cheek, but also pretty close to the truth at times. The facts are simple, having a chronic illness is hard. Supporting someone you care about or are close to with a chronic illness is hard. Neither party will get it right all of the time, but the best chance we’ve got is to keep open the lines of communication and to try (easier said than done alert) not to take it all too seriously. Only then have we got the best chance of coming through this whole things with minimal relationship scars and bruising!

What would you add to this open letter telling people what you need them to know about your chronic illness? Do you have any funny stories about struggling to effectively communicate your spoonie needs? Let me know in the comments below.

Keep your head up Wellness Warrior 💪 ,

Kate

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