Monday 1 November 2010

There is nothing Worse

to a chronic disease sufferer than to be told that if they simply "Believe" that they will be "cured". You wouldn't tell a blind man to "try" harder and he will see, or an amputee that their limb will be restored if they had enough "faith".

It's insulting, it discounts the pain the person lives with, their panic whenever some new twidge appears as they worry about what else in their body is now broken; or how far their disease has advanced now. You don't see their fear that today may be the day they become one of the many who are paralyzed due to an embolism no one knew was there or that they will become one of the many young women who are dead at 28 due to a heart attack or renal failure (kidney).

These platitudes only show your complete ignorance and your abject willingness to ignore the obvious as well as you complete lack of understanding of both the disease and the person's pain.  They make YOU feel better but they only add more guilt and pain to the sufferer because now they know if they need a helping hand your just another of those they can't count on.

The patient already has enough on their plates without knowing that they have even fewer people to rely on. Ignoring the disease because it makes you uncomfortable, only makes the patient feel more isolated than they already do.  And it adds to their stress, if you can't be relied on NOW in the early stages of this disease, where will the patient be when they have suffered from a stroke, a heart attack, pulmonary effusions (fluid in the lining of the lungs) pericarditis (inflammation around the heart), liver failure, renal (kidney) failure, brain adhesions (leading to long and short term memory loss),  or loss of vision, and eventually being told by their doctor that their meds aren't  working anymore?

Keep your platitudes, I only deal in the facts, and the truth. There is NO CURE there is only meds and maybe REMISSION (a small break from the disease) don't insult my intelligence or discount my pain to make yourself feel better.  They can't find a cure when they have no ideas what causes the disease.

Ask questions, get over YOUR fear, because this disease isn't about YOU!!!! You only see it from the outside looking in, imagine being the person who has to live with the disease and their fear. Believe this it could be a whole lot worse.

Signed frustrated chronic disease sufferer.


  1. As one who has a chronic "invisible" to other's who refuse to see, this is such an excellent post. I'm going to send it to those family members and friends who may not acknowledge those of us who suffer. Thank you so much and may this year bring you courage, joy and health on all levels.

  2. @Wendy thanks I'm glad if it can help I had to write this after the millionth "we are praying for a healing for you, just believe God's got a healing waiting for you" i have nothing against faith healing and I do believe prayer works, but to pretend that I'm going to be restored just so you don't have to deal with it is hurtful. So I had to vent it was either that or scream. this seemed more useful.

  3. Thank You so much, as Wendy said often chronic problems are "invisible" and people somehow assume that because you LOOK ok, everything IS ok. I am glad that you had the courage to post this it is a breath of fresh air for those of us with "invisible" problems. Reading your post it also struck me that this is often how people end up treating a person who has just lost a close family member etc. Instead of trying to help they dont know what to say or say crap that isnt true, instead of helping the bereaved they make them feel alone isolated and like it is wrong to be grieving.
    Your post is very deep and has struck me on two levels, like Wendy I am compelled to thank You and hope the coming of this new year will bring you love and support, courage and happiness.
    May your Rants from the broom never go astray, this one hasnt!

  4. @ Faerie Sage, thank you, yes I wanted to address that also, because so many are uncomfortable dealing with death, we have all these different ways of saying it instead of saying dead. Anything that highlights our mortality is something to be covered up and quickly gotten over, like we don't want to see it so hurry up and start feeling better already. It's one of the reasons I love paganism, death is seen as a part of life and we are kinda forced to accept it while others fear it. Thanks for the well wishes, I hope my rants don't go astray either.
    Thanks for reading and commenting

  5. I have gifted you three blog awards, the Zombie Kitty, Zombie Rabbit and A Clucking Great Blog cause your worth it! Check the post out at Blessed Be


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