The darker side of lupus #8

CALLING ALL PROFESSIONALS - THIS RANT IS FOR YOU.........sorry, its long.. lol


Ignored by most professionals

Played down continually by the sufferer, afraid of consequences

Misunderstood by the majority of friends, family, aquaintances and employers

Totally misunderstood by the pen pushers of the benefits section (although if you find a good one, they are fantastic)

Misunderstood by physiotherapists/manipulaters/professional excersise experts/paramedics

Totally misunderstood by the general public

Pain is PERSONAL, personal to each and everyone of us as lupies and anyone else who suffers from this silent enemy.

It can cause one or all of the following emotional and physical symtoms, it can change from day to day, hour to hour, minute to minute and even second to second......

NO ONE, regardless of there position, dr, consultant, friends, family, therapist etc has the right to tell you they know best how to manage your pain.... yes , they can advise and with the right APPROACH, ATTITUDE AND HELP they can become an intrigal part of your management plan..... HOWEVER


We are people, not just numbers to add to their targets or achievements, not numbers to be prodded, poked, pulled and bounced from pillar to post because they are to afraid to say....we are sorry, we have no answers........

Pain can and does cause............. depression, anxiety, anger, frustration, bitterness, mood swings, chronic exhaustion, self doubt, exasperation, agrophobia, pain killer addiction and worst if all, for me, FEAR....

Fear is self perpetuating, you know if you exercise its painful, so you dont, you know that going out is painful, so you dont, you that showering is painful so you dont, you know just getting out of bed is sooooo painful, so you dont - u can see where this is going.....

If you dont take control (and believe me I know how dufficult that can be), if you dont learn to manage your individual pain that is unique to you, its very, very, very hard to climb back up from the blackness that pain causes. But we do learn, we adapt, we manage, we find ways of dealing with everything this dam illness throws at us, we stay strong... but pain catches you out, it wares you down, it tires you out - it is soul destroying..... its invisible, it stalks you and takes you to hell and back on a daily basis.

Pain can be and is invisible in the very complicated lupus world of symptoms but worse of all it can be the one thing that sends people over the presipice, into the blackness of lupus fog, into the depths of depression, because of its ability to take control of your body and mind, sometimes without you realising, sometimes with you actually realising it is happening........but you cant get rid of it.......

The worst thing anyone one can say to you is 'tomorrow will be bettter'

As many lupies know, it will not get better...... it will just be a little less or a little more depending on the day, hour, minuet or second..... TO ALL YOU PROFESSIONALS OUT THERE - IT DOES NOT GO AWAY - EVER!!!!!

Maybe, just maybe, if you took the time, as professionals should, to actually LISTEN to patients and treat them as people and not just numbers through the door, you may start to understand, appriciate and marvel and the very complicated symptoms of us soooo clever, it mimics, plays and tricks you, if it was a person, it would be the worlds best conman and probably very wealthy... lol

Each and everyone lupus sufferer has unique symptoms to them that they deal with BUT every single one of the thousands of lupus sufferers are brave, bold, courageous, resilient and strong..... we have to be... BUT WE HAVE ONE COMMON THREAD..........PAIN, PAIN AND MORE PAIN.

PLEASE, take the time to listen, read the posts here, talk to us..... you may be surprised at how knowledgeable we actually are, you never know, you may also learn a thing or two.......

We may not be drs, consultants, therapists or physiotherapists but we know our bodies, our minds and most if all our condition, so please, please treat us with the respect we deserve and not as thornes in your sides, hypochondriacs, over anxious worriers or general dr/hospital hoppers.

To all the wonderful lupies on health unlocked and around the world..... stay strong.....

One day the world WILL be ours...............πŸ˜™

8 Replies

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  • Hi Amandalilley

    Well said, that's courageous of you!

    Stay strong and positive! X

  • Very well said indeed πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘

  • πŸŒŸπŸ’πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘So many of them seem to need to become patients themselves before they REALLY understand all many times have I heard or read a medic or healthcare type say they never realised or appreciated all this until they became ill themselves...sadly, the same is true of many how often do our families, friends, colleagues also show this kind of lack of understanding & respect...

  • Ooh Amanda you've got it right. I cried when I first read it and again as I read it to my husband. It's so "right-on". I plan to take it to my doctors. What you said could be a day, every day in fact, of my life. Jeanne

  • Thank you so much fof your reply. I am honoured that you feel it may help.

    Please do let me know if you have any luck with your drs.

    Sending love, hugs and may the universe continue to give you strength and courage to tackle each day or night as you need. X

  • You really have told it as it is....I will show this to those who don't get it.....the ...but you rested yesterday ....crew ....and the ....why are you in bed at this time.....

    Thank you for reminding me that it's okay to say it as it is.....rather than smiling through but fume inside....

    Gentle hugs, wishing you the strength you need to face each day

  • Oh you are soooooo right and well flipping done for putting it into words. You should get it printed up and flyer doctors and hospital waiting areas in an attempt to educate people. ☺

    Peace, Luv n light

    Jan x

  • Absolutely agree with you. βœ”οΈ So well expressed!

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