It’s ok…

The Hibbs Lupus Trust - Viki Hibbs

To you who has just heard the word ‘lupus’ for the first time. It’s ok to say ‘it’s never lupus’ and ignore it.

To you who’s wondering how there can possibly be any more blood in your body after all those tests. It’s ok to tell the phlebotomist how to do their job and select which vein you want to use next time.

To you who’s sat wide-eyed on Google scaring yourself by reading too much. It’s ok to self-edit a website to write something that’s much more friendly.

To you who’s woken up in hospital at 3am feeling like you’re stuck in the middle of a nightmare. It’s ok to hide under the hospital blankets and pretend you’re anywhere but there.

To you who woke up in bed this morning and couldn’t move your legs without a ripple of pain cascading through your body. It’s ok to nearly fall on your head trying to put your socks on without straightening your legs because you’re too stubborn to admit you’re struggling.

To you who’s got a cold and your ridiculous immune system has given up the ghost. It’s ok to spray everyone you meet with alcohol gel before saying hello.

To you who’s cancelled plans for the sixth time running. It’s ok to join in via Skype, or just to be elusive.

To you who’s watching your friends’ lives play out on social media and wishing things were just that bit simpler. It’s ok to tell yourself it’s all made up anyway and dream up a better status even if it’s not true.

To you who wants to start a family but are terrified your body will let you down. It’s ok to smugly snuggle up under the duvet for an extra hour knowing you don’t have any responsibilities.

To you who can’t get rid of the rash on your face. It’s ok to slap a filter on your photo and tag it #nofilter anyway.

To you who’s planning a wedding and can’t see how you’ll make it through the day. It’s ok to ask for some extra medication to give you the kick you need and to become a recluse for a week afterwards.

To you who has had to give up a hobby that made you ‘you’. It’s ok that your new hobby is simply staring out the window.

To you who has lost friends because they just didn’t ‘get it’. It’s ok to stalk their social media profiles and feel a little regret that it didn’t work out.

To you who has heard someone whisper ‘she’s/he’s sick again’. It’s ok to trip them up with your walking stick.

To you who has heard the saying ‘But You don’t look sick’ one too many times. It’s ok to reply with ‘you don’t look stupid, but that’s clearly not true’.

To you spending another weekend on the sofa because you’ve already used all your energy. It’s ok to ignore the housework until the dust gets up and cleans itself.

To you who’s dug the last few pounds out of your purse to pay for your meds. It’s ok to ask for help.

To you throwing your entire wardrobe onto the floor because nothing fits after the meds made you put on weight / made you eat another chocolate bar (same thing!). It’s ok to not clear up after yourself and to spend the rest of the evening online shopping.

To you throwing up or collecting up hair that’s fallen out. It’s ok to wonder how on earth you got here through the tears.

It’s ok to cry. It’s ok to ask ‘why me’. It’s ok to scream into a pillow.

It’s ok to think about what your life would have been without lupus. Who you’d meet, what you’d do, the kind of person you’d be.

It’s ok to feel that you can not possibly do any of this for another day. But just remember, your success rate for getting through the day is already 100%. You’re already winning.

Thank you to Rachel for sharing this with us. We’d like to hear you ‘it’s ok’ moments.

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5 Comments

  1. Alice on May 10, 2016 at 07:46

    I’m in tears. I love it. It’s so true, it just says everything perfectly.

  2. Linda on May 10, 2016 at 08:45

    Very well written and very true. I’m lucky to have a lot of support. Keep up the good work folks ? Linda xx

  3. Ritz on May 10, 2016 at 12:09

    This is fantastic! Pretty much the last 21 years of my life in ~500 words. Kudos to the writer!

  4. Michelle on May 10, 2017 at 13:06

    Four years since I was diagnosed. I HATE WHAT IT HAS? DONE TO ME.!!! I call it loopy lupus because It is .It took over me,I got panic attacks because I was spending far too much time isolated in the house through the amount of pain.Emotional doesnt even come close,I cried a lot ,I was angry why me. I was 44 and felt like a pensioner ,the embarrassment having to be helped upstairs,getting out of a chair struggling to walk my lowest moment was when I couldn’t get out of the bath.I AM A LOT BETTER now but still no baths only showers.The flare ups come but it is the fatigue that gets me.
    I am a mother of five and I know it has affected my children and my husband when I look in a mirror I try to find the reflection of the person I used to be.I will carry on fighting Lupus because I have no choice x

  5. Parwy on October 20, 2018 at 21:17

    This really hit home for me and made me emotional. Talking about the painful experiences lets us all relate somehow. Lupus drains us physically and mentally but thank you for pointing out positivity. I love your optimism.

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