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What does #BeKind actually mean?

By Amanda

This week's topic @thatpatientcollective is #BeKind - we see it plastered all over social medica but what does it actually mean?

Today, Amanda is giving us an insight into what showing that you care actually looks like, so you can best support the patients in your life!

My name is Amanda, I'm 35 years old and I have lived the patient life for almost 15 years now. Probably longer, as symptoms were underlying for many years before that but 2009 is when it all really kicked off! 

Tell us a bit about you:

One amazing Immunologist, who unfortunately left the UK, felt that all of my ‘diagnoses’ are linked and part of one big thing …. Unfortunately, I can't find anyone else like him and he left before managing to figure it out, so I'm left with this: 

  • Chronic Spontaneous Urticaria and Angioedema with Idiopathic Anaphylaxis (though my presentation and treatment required don't really fit with this fully) 

  • Chronic Kidney Disease stage 3

  • Secondary Adrenal Insufficiency

  • Some kind of inflammatory liver issue - massive fluctuations in liver enzymes but no diagnosis or reason can be found. 

  • Diverticular Disease 

  • Migraines

  • Hypertension 

I work full time, as an Admin Team Leader in the NHS. I love my job and those I work with. My job is my therapy as I always say. 

How have the people around you supported you through patient life?

I have a very small group of close friends and an even smaller family but these guys keep me going always, along with my two big dogs! Whether it's making me laugh when I'm feeling a bit low, making me a cup of poorly tea, grabbing me an emergency cheese pasty or chocolate bar, giving me a hug or the worse jobs, coming to visit me in hospital or helping me when I'm stuck in bed, unable to walk to the bathroom unaided or able to get my own food and drinks.  They never make me feel like I'm causing any inconvenience and will jump straight in to help. 

Have you been let down by other people during your patient journey?

I have been let down by so many people, it makes those who stand by me, shine even brighter. Being in hospital, often in Critical Care is a part of my life, however it never gets any easier. In fact it gets harder.  I know what can happen to me when I'm so unwell, I know what to expect and that's terrifying. I see people on the ward with different visitors in the morning and evening. That used to be me too but it's got boring for them now.  People say ‘let me know if you need anything’ but I am too stubborn to do that. 

What do you look for from the people around you?

Those who just turn up, or tell me they are free to come if I want company,  knowing I probably do…they're the special ones! Those who do that consistently and not just the first time when it's all new to them. 

The support and encouragement of those around me is so important. It's hard work living with all of this and as much as I brush things off and carry on as normal, sometimes I need a rant, or just someone to chat things through with. Someone to distract me with trips out for lunch or a mega shopping session. 

Something to take me away from the cycle of weekly appointments, bloods and scans but something more exciting than work and sleep! 


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