Don’t Say These Things

Ah… it’s a chronic illness blog – I’m gonna class this in my Fibro Updates tag, however this whole blog applies to every single chronic illness out there (I see you spoonies. I see you.)

Read on…. it may be a long one… I like to be thorough.

The point of this blog is to open a dialogue, I guess.  I’ve been asked “what is it people say that piss you off?” And by “you” they meant the chronically ill community in general – so I put out a message (if you follow me on instagram or twitter you may have seen it) asking the spoonie community what they’re tired of hearing; it all is pretty much the same across the board.

  • But you don’t look sick.

Thank you, that is a real compliment because we work hard not to let our illnesses show.  However you should be aware that not all illnesses and disabilities are visible; that’s why they’re called invisible illness and invisible disability.

  • At least you don’t have cancer.

Well no, we don’t and that’s great because “The Big C” is something nobody wants…. the problem is that MOST cancer’s can be treated and cured. What we’re dealing with can sometimes be treated; but the medications can be dangerous, habit building and come with a long list of added side effects.  Most of the side effects we’re already dealing with as part of our illnesses in the first place.

  • Be happy you even have limbs.

Again, we aren’t ungrateful. We are happy we have limbs.  What we’re not happy about is that these limbs often work against us.  Speaking from my own experience; almost constant pins and needles, swelling, numbess, paralysis, burning, itching, hyper sensitivity… the list goes on – and when you get two or more of these issues at once it drives you crazy…. there have been days where I wish I didn’t have legs.

  • It can’t be that bad.

Let me correct you; YES IT IS. Simple as. I’ll describe my fibromyalgia for you (and none of this is an over statement.  I’m not hamming it up.)

Image this – you have the absolute worst flu that your life has ever seen; body aches 24/7, cold sweats, wooly head, eye pain, ear ache, shivers, over heating…. the works.  Then while you have the flu, you trip and fall down your stairs; you bounce and roll and hit every step on the way down. Somehow you manage to get dressed because luckily, even though it feels like it, no bones are broken. Then you head off to work for the day but a cyclist knocks you down and you hit your head. No concussion (yay) but your head still hurts like it’s been cracked open. You walk around and do your job – you’re dizzy and confused,  forgetting the simplest of things, your eyes hurt even more because of your headache from earlier. Your collegues don’t understand because somehow you have no bruises or marks. They sigh and huff and tell you to just get on with it.  By the grace of whatever God(s) you believe in, you finish work.  You step out and immediately need sunglasses because that headache has gotten worse, that pesky cyclist knocks you over again and this time you hurt your hip and lower back; again nothing broken but it still feels like it and you still have no marks or bruises. You get home and trip through the front door landing on your face before crawling to your bed, because fuck this shit!  Your spouse/parent (s)/siblings/children just don’t get it and once again you’re told to just get on with it, but alas you’re exhausted and can barely lift your head.

You wake up the next day…. and it all happens all over again. And this…. this is on a normal “good” day.  Out of 1o on my good days, my pain is about a 5 or 6.

On a week when I flare (because for me, personally it’s never just a day or two) my pain is a 7 or 8 and I tend to stay in bed because I will (along with all the above) be cold, have cluster headaches, vision will be terrible and I can’t do anything that takes too much concentration; it’s just not happening.

When I have a fibromyalgia crisis (I’ve only had three…..) my pain is off the scale (honestly. A 10 isn’t high enough); I crawl to the bathroom. I stay hydrated but food is a no go.  My skin is hyper sensitive to everything so even sitting or laying is painful. Clothes are painful. Water is painful.

I can guarantee that every healthy person, if they went through a fibromyalgia crisis, would be in a hospital on morphine… I deal with it because I know it will be over in three days (that’s generally how long my crisis last).

  • You should try yoga /exercise more.
  • Cut out all animal products.
  • VITAMINS!
  • KALE!
  • COCONUT OIL!
  • Don’t take your prescribed medication.

This one infuriates me. If it were not for my meds, I wouldn’t be able to crawl out of bed in the morning.  I wouln’t be able to function on even a base level.

  • But it’s poisoning you and keeping you a slave etc etc etc

Every medication on the planet is a poison if you take enough.

  • My cousin’s girlfriend’s brother’s best friend’s beagle’s sister’s owner took this amazing…..

No. We’ve tried it. It failed. It’s a scam.

  • Juice cleanses. It’s all toxins.

All juice/tea/shake “cleansers” do is waste your damn money. Your liver (and kidneys?) naturally deal with toxins on a daily basis.  Trust me when I say not one chronically ill person wants a glorified stool softener…. we have those a plenty. We also have stool hardeners.  It’s a delicate balancing act.

  • Don’t drink coffee/Caffeine/Sugary drinks.

It’s cute you think I can function without my daily fix of caffeine.  No, seriously. Withour caffeine I don’t function.  I can’t say in all honesty that it wakes me up, but it keeps me conscious long enough to do what I need to get done during the day.

  • You just need sunshine!

*insert a vampire hissing here* All jokes asside, we do generally like sunshine and we do like getting out because it makes us feel good.  However that comes with extraordinary amounts of pain and days of pre-planning.

  • Go swimming.
  • YOGA!
  • PILATES!
  • All natural food products.
  • No GM.

GM food is really not at fault, trust me I’ve researched the crap out of it. GM is not an issue.

  • Get better soon.

We won’t get better. We have this for life. We don’t get to recover.

  • So you don’t have time for me then?

Stop 👏 Trying 👏 To 👏 Guilt 👏 Trip 👏 Us 👏.  We have enough internalised guilt as it is.  We would dearly love to spend time with you. We want to hang out.  Truth is though, we have something (hospital or doctor appointment usually) coming up in three days and we have to mentally and physically prepare for that.

  • It must be nice to stay in bed all day.

I fucking LOVE watching the world pass me by.  I LOVE not being able to hang out, go to the circus, go travelling, have a social life… I LOVE depending on someone else to help me shower and dress.  I LOVE not living a life.

  • You’re faking it.

Faking what? Looking well? Yes… thank you for noticing that. Under my three layers of make up are under-eye bags I can travel with for a week and skin so pale I look like a vampire that hasn’t fed in a few days. So thank you for noticing how good I am at faking being well.

  • Wish I could legally get high.

Healthy people would get high taking my meds. I’m so used to them that they just kinda take the edge off my pain.  No, I don’t get high on my meds.

  • Just walk it off.
  • Exercise never hurt anyone.
  • It’s good for you.

That makes a whole sentence and I BEG TO DIFFER.

  • Don’t sleep so much.
  • Get more sleep.
  • POSITIVE THINKING!

The longer version of that last one is “You’re always so negative, if you were more positive then your body would heal itself.”

While I agree (to an extent) that the way we think affects our physical being… chronic illness will not magically go away if we just “stay positive”.

Quoting a friend (who wishes to remain anonymous)

“You need to think more positive!”

“I’m not usually a violent person, however I am fucking POSITIVE I’ll beat your face in, if you don’t shut up!”

That is, secretly, what every spoonie thinks when you talk about thinking positive.

  • You have to put your faith in god.
  • You have to believe in “him”.
  • Trust in god.

I am gonna answer this one quite personally and I want to preface it by saying that I do not mean anyone any offence and I truly apologize if I do offend anyone in the course of the following…..

I dont believe in your christian god because i don’t understand how anyone can let children starve and die, let money hungry ruthless “business men” rule and shit on the “little people”, watch people suffer day after day and do absolutely nothing…. yet can somehow be very interested in what two consenting adults do in the privacy of their bedroom… it’s not for me, not something I can get behind… however the more I read into true Satanism…..

  • Have you tried the _____ diet.

Yes, most likely we have…. if we aren’t still doing it you can bet your ass it didn’t work.

  • Everyone gets tired.

I completely agree…. however you have no idea how it feels to go to bed exhausted, sleep MAYBE for four hours and wake up feeling tired; night after night after night.

  • You’re too young.

Chronic illnesses don’t discriminate. Remember that.

  • There are people worse off than you.

Again, completely true.  None of us ever said there weren’t.  However this isn’t a competition. We don’t win stuff for being worse off or better off.  We simply want you to see OUR struggles, not belittle us.

  • It’ll pass.

Yeah….when we die. I’m not even sorry for being harsh on this one. For many of us, death is the only thing that will stop our pain and suffering.   The suicide rate for the chronically ill community is ridiculously high. Ask yourself WHY that is.

I’ve started a chronic illness pinboard which you can find here …. it’s pretty bare right now but I have plans to fill it up.

~~~~~~~~~~

OK so we’ve gone over a few things that aren’t helpful.  I want to switch it around and help YOU to help US.

Try the following…

  • How are you feeling?

Only ask this if you are genuinely interested and aren’t gonna roll your eyes and revert to a no-go comment after we answer, especially if we’re on a bad day.

When someone (anyone) asks us this or any variation, a spoonie’s mind will race to figure out if you genuinely wanna know or if you’re just being polite.

  • I hope you feel better soon.

I much prefer this to “get well”, because it doesn’t imply that you expect me to get better. It jusy implies you want me to feel better than I currently do and trust me so do I.

  • I can’t experience your pain but help me to understand it.
  • Where is most of your pain?
  • What meds do you take and what do they do?
  • What has your doctor/therapist suggested?
  • How can I help your day go easier?
  • Would you like my help?
  • I’m sorry you can’t visit me, how about I come to you?
  • It’s great you want to meet, where is easier for you?

The following is what mean’s the most.

  • I’m here for you.
  • I got your back.
  • You can lean on me.
  • It’s not your fault.
  • This isn’t something you can control; I accept that.
  • I want to help.

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