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What to say to someone with ankylosing spondylitis
09 Apr 2016
10 Things, Living with Ankylosing Spondylitis (AS), Wellness

10 things you SHOULD say to someone with a chronic illness

I have seen countless posts online and on social media about all the things people shouldn’t say to someone with chronic illness, whilst I understand the points made in these posts, this post is going to be a little different.
April is Ankylosing Spondylitis awareness month, and along with raising awareness, I felt it was time to help those people who know and/or live with someone who suffers from AS by letting them in on all the things that they SHOULD say to their partner, friend or family member.
People who don’t have a chronic illness often have no comprehension of what a condition is, let alone what it actually feels like to live with it, so it is my aim to not only raise awareness of Ankylosing Spondylitis, but to also help those who WANT to say the right thing and want to help in any way they can.

10 things you should say to someone with a chronic illness:

Don’t forget, every person is different, some want to hear these things, others prefer to simply get on with things without having others running around trying to help or offer ‘solutions’. Even those who want to hear these things, may not want to hear it all the time, so go easy!

What follows is a list which I think is far more effective than a “What not to say”, let’s be positive and encourage those who want to help…

1. “I would like to understand more about your condition.”

I am someone who is still only just getting an understanding of this condition, however knowing that someone actually wants to understand a bit more about the condition makes you feel that you’re not in this alone.

2. “I know how hard you are trying.”

Everyone likes to have their hard work acknowledgement, but as I have mentioned before, sometimes the smallest things take a huge amount of energy to achieve, so sometimes it is just nice to hear some words of encouragement to give you the motivation to push through and make it through the day.

Equally, those living with someone with a chronic illness, may need to hear that from time to time and know that you appreciate all the little things they do for them.

3. “I am here for you.”

There isn’t a huge amount to say on this point, as it really speaks for itself. I am someone who randomly checks in on friends; if I know a friend or family member is going through something, then I let them know I am thinking of them and that I am there for them in whatever capacity they need me. We all know how amazing it feels when someone says they are they for you, so saying you are there for someone else may just be all they need.

4. “It’s been a while, how are you?”

I have come to realise that for some people, it is very much “out of sight, out of mind”. Often, someone with a chronic illness may have missed a lot of get togethers, which can cause concern, as through no fault of their own, they feel like they are being left behind or forgotten. So, if you know anyone with a chronic illness, any contact just checking in and saying hello and asking how they are, might just make their week.

5. “Let me do that for you.”

I have said before, sometimes the little things use a lot of energy, like doing the housework, doing the weekly shop or some days, one can wake feeling completely wiped out.

I am not complaining about what I do on a daily basis, it’s all the little things that keep me busy, that keep me on my toes and keep me feeling ‘normal’. However, sometimes I just reach a limit and I simply cannot muster anymore energy to get the simplest of jobs complete. Let’s say the dishes or hoovering, in swoops my amazing husband, after a really long day at work and he will just run the hoover around for me, get our daughter to bed and finish the dishes.

I don’t think he realises, just how much I appreciate him doing things like that… I tell him, I tell him often, but those who live with someone with a chronic illness, often are the unsung heroes, who can do the smallest little job that means a list of chores is complete and off a list in a heartbeat…

6. “I believe you.”

One of the hardest things, when people find out about my chronic condition is the look of “what on earth is that?” followed by the look of doubt, when outwardly I don’t look as unwell as I say I am. I don’t have a cast or a sling, so I often feel that perhaps people don’t believe me and just hearing that they do, is really very comforting.

7. “Please don’t worry or feel guilty if you have to cancel plans, I totally understand.”

One of my biggest emotions myself and others go through with chronic illness is guilt or feeling like a total burden to those you love the most.

It is never easy cancelling plans, and often it doesn’t happen until the twelfth hour because I have been hoping and hoping that I will miraculously feel better. I will beat myself up about it, so letting someone know that you don’t and won’t hold it against them, if they cancel may not seem like much to you, but to someone with a chronic illness, it will really help alleviate the guilt. It will also remind them that you’re not going anywhere, even if they cancel on you.

 

The flip side of number 7, is that if it drives you crazy that your friend is unwell or can’t make things, just say…

 

8. …”I’m not sure I totally understand why you’re cancelling?”

If you are friends with someone who has an inviable illness and you simply don’t understand why they can’t come and see you at the last minute, just talk about it. Chances are, the person with a chronic illness is worried that you are annoyed with them, so just be open and talk about things. If you don’t understand, just ask; we may be sick, but we are still human and we don’t want to piss anyone off, especially our nearest and dearest!

9. “You know if you come over, you know you can just take it easy?”

One of the reasons I have cancelled on people in the past… I may be in this alone on this point but here it is… is because I am worried that if I don’t appear to be on top form, that I am going to be judged.

You might be an old friend, or even a really close family member, but I don’t want people seeing me at my worst, so knowing that it is ok to go and see someone and I don’t have to be bright and breezy takes a HUGE amount of pressure off!

10. “Do you fancy a rant or a hug?”

Sometimes the very best thing you can do for someone, is just to be there. It is the same for everyone; I truly believe that the single most supportive gesture for a friend or loved one who is going through something, is just letting them rant to you, or showing your love and support through a huge (gentle!) hug.

 

Failing all of the above…

It is worth remembering, that if you don’t know what to say, that’s ok too. As I said in point 8, you may simply not understand the condition, you may not even want to know all the ins and outs of what they are going through OR you may not be that sort of person, and that really is ok!

Ultimately, none of the above may be right for your friend or loved one… but, let’s face it, we all like to know that people are there for us and that they care, so every once in a while, just let someone know that you are there, because that could make the difference between a shocker of a day and an absolutely cracking day…

 


 

Further reading on Ankylosing Spondylitis (AS)

You can read all about Ankylosing Spondylitis using the following links:
  • The National Ankylosing Spondylitis (AS) Society
  • ‘My Journey to diagnosis – Ankylosing Spondylitis’
  • 10 things I would like to explain to you about my invisible illness, Ankylosing Spondylitis
TAGS:10 ThingsNational Ankylosing Spondylitis Society (NASS)
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The Woodland Wife

Inspired by family, wild nature and simplicity

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With an honest, practical and ethical focus on slow living, an outdoor lifestyle, family, parenting and wellness, I love working with brands and individuals who share the same ethics.

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