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The #1 Question NOT to Ask People with Chronic Illness This Holiday Season

The holidays are a time for family gatherings, and family gatherings inevitably lead to probing questions about everyone’s lives. 

Just as every senior in college hates to be asked about their plans after graduation, or if they have a job “lined up,” and newlyweds hate to be asked when they plan to have children, there are questions that people with chronic illnesses are used to being asked, and get tired of answering.   

Every family get-together without fail, all the relatives who once pinched cheeks and tousled hair now gather ‘round me and ask “How do you feel?”

I hate this question, and I’ll give you five reasons why, because I understand that at the surface it seems quite innocent, and reasonable to ask such a question.  

But I am being singled out by it.  No one else is being asked how he or she feels.  

My friends and family are asking because they know about my health issues and they want an update on how things are going.  

But here’s the thing; I have a chronic illness.  

That means some days are bad, some are good, and some are just ok, but this doesn’t go away.  No matter how I am feeling physically, I am still feeling like myself, because dealing with this illness is just a part of my life. 
1. I don’t always want to explain that though. 
    And I don’t always want to have to discuss my doctors, or my current treatment plans,
    Or medications,
    Or pain level. 

    Much of my life is consumed by discussing, and managing, my chronic illness.   


    So,
    When I’m with my family I want to focus on spending time together. 

    The medical nonsense I deal with everyday is the last thing I want to discuss at a holiday Party.  

     That would be like me bringing up your boss.....
    .......
      Or your in laws.....
    ..........
    ....... Or your taxes.....
    ...................

    It’s no fun to go through and it’s really no fun to talk about.  

    I don’t think my loved ones realize how precious my time with them is and how much it truly Means to me.  It takes so much effort for me to get dressed and washed and out of the house, That I don’t get to socialize very often. 

    When I do,
    I value that time out with loved ones more than anything else in this world.  

    Having a chronic illness teaches you many lessons and one is what you truly value in life.  

    I value time with the people I love,
    So when I finally have that time,
    Spending it discussing an emotional and stressful topic like my health seems wasteful.

2. Because I find the topic of my health so emotional and stressful, I have a hard time expressing myself when I am asked about it.           This leaves me feeling flustered, embarrassed, and on the spot. 

        I feel like I don’t have words or that I don’t know the answer to questions I’m asked
        And I feel that I look stupid in front of people I care about. 

        It’s not that I am ill informed of my own conditions.  

        I simply feel emotionally overwhelmed
        Especially,
        If I am not expecting a medical question in a social situation
        Or,
        If I am particularly worried about a certain issue. 
       
        Also,
        There are mental or cognitive effects of my medications,
        Pain level,
        And other conditions,
        That can leave me feeling tired, confused, or unable to find words. 

        I am always in a constant fear on being judged because of so many past negative experiences of
        Strangers,
        Doctors,
        And friends
        Being cruel to me because of my illness.  

        So,
        I am always on the alert when I am symptomatic or when I am asked a question. 
        Basically anytime any aspect of my illness may be discovered. 

        There are only about three or four people I truly trust with my illness, so a holiday party is not a
        Safe place even if it is all family and close friends.  


3. People ask just to be polite.            They ask the question,
         But when I start to answer,
         Their eyes glaze over.  
         
         If you don’t care, don’t ask! 

         That simple. 

         We all get tangled up in these social norms and start asking people questions just because we
         Think we should and not because we actually want any kind of answer. 

         If I tell them anything too complicated they get bored
         And if I tell them anything to sad,
         They get super uncomfortable and don’t know what to do or say.  

         The only good answer to the question “how do you feel”
         When most people ask it,
         Is either “better”, “good”, “ok”, or “fine”.

And this, my friends, is how people with chronic illnesses have become great and habitual liars.    We lie because so many of you, our dearest loved ones, want us to. 

You implore us with your eyes to give you good news, and you make your discontent clear if we try to express the truth. 

 Chronic illness doesn’t make for good holiday party small talk, but we know that.  

 It was you that asked..... 

We want to make you happy, even if we aren't feeling well, or are feeling very upset about our current health situation.

4. Everyone always asks the same question.           Doesn’t anyone have anything else to ask me about? 

        There is more to me than my illness. 
        I have a brain in my head.  

        I’m still the same person I’ve always been. 

        I feel like I’m only asked questions about my health now,
        Like it defines me to a lot of family and friends,
        Or,
        That they don’t know what to ask me about because I have few things going on in my life. 

        I’ve had to focus on my health, but I am still a complete human being with varied interests.

5. When it comes down to it, everyone wants to hear that you’re better.           And that’s the biggest reason I hate this question. 

        I wish I was better too,
        But I can’t tell you I am,
        Because I’m not. 

        This is chronic. 

        I am most likely,
        Without serious medical breakthroughs,
        Going to be like this forever. 

        I am not getting better. 

        That’s harder for me than it is for you, so please stop asking. 


I’ve thought of some questions to ask instead of "How are you feeling?"I know I would appreciate being asked some of these questions instead, and my guess is that your chronically ill friends and family will feel the same.  Try some of these out as you spend time with loved ones over the holiday season.

Have you heard this joke…..?
What are you watching on Netflix?
Did you know…..?
What books are you reading? 
Have you seen any good movies lately?
Have you heard about what happened in the news…….?


What it means for you and your Holiday PlansI'm not mad at anyone who asks me how I am feeling, and I don't think most chronically ill people are.
We understand that the question is an attempt to express concern, but for the reasons above, it really isn't a good question to ask, especially in large social situations.
No one likes to be asked the same question again and again at the same party especially if the topic is emotional or stressful.
Just avoid the question.


Chronic Illness Warriors! If you are a Chronic Illness warrior, I'd love to hear your opinion of "How are you Feeling?"
Do you get asked this question a lot?
Do you have any Family Gathering or Holiday Party stories involving your Chronic Illness?
Are there questions you prefer being asked?

Let me know in the comments below!


If you enjoyed this post please share!!!Wishing you Healing Hugs And Hope

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October is Dysautonomia Awareness Month

It's time to #MakeNoiseForTurquoise

In fact, On October the first, Dysautonomia International hosted a Celebration on the Canadian side of Niagara Falls to mark the beginning of Dysautonomia Awareness Month, and they lit the falls a beautiful shade of turquoise.

So in honor of this beautiful month of October, I thought I'd write a Dysautonomia themed post.
My form of Dysautonomia is POTS.

Yanno, Postural Orthostatic Tachycardia Syndrome.  Duh.

Anyhoo, for many of us with POTS, hydration is a way of life.  When we think POTS, we think salt and water, and awful compression tights, and a whole lot of fainting.  
 

Before I get into my hydration tips, PLEASE understand that I am not now, nor have I ever been a doctor.  I am not qualified to give medical advice.  What follows is simply my experience as someone with Dysautonomia, and what I have heard from other people with Dysautonomia.  PLEASE, discuss all treatments with your doctor before beginning or changing them. Again, I am not a doctor.

Also, this post contains affiliate links please see the full disclosure in the privacy policy under "links to other sites" or simply scroll to the bottom of the page.
Here Are My Top 5 Favorite Ways To Hydrate During Dysautonomia Awareness Month1. GatoradeMaybe the most obvious and most popular choice for hydration. 

Gatorade is full of sugar and delicious.

It certainly works as a means of hydrating and it is so much tastier than salt water.

It's also much easier on my tummy than salt tablets, although it is full of sugar which some studies have shown may worsen POTS symptoms.

2. NuunFor a less sugary option I look to Nuun Hydration Electrolyte Drink Tablets.

These tablets dissolve and fizz in water like Alka-Seltzer.

You're supposed to dissolve them in a large amount of water, but I don't like how they taste or how they make my stomach feel in a lot of water, so I dissolve them in half a bottle of water and then drink more water after that.

I don't know if that is advisable (I'm not a doctor) but, that is what I do.

They make me feel ok especially on hot days, and I can tolerate the taste.

Thumbs up.

3. Salt TabsThese are hard on my stomach, and I have to be careful to drink a lot of water with them, but they are very helpful in controlling my symptoms, especially on hot days.

I notice a decrease in my dizziness and fatigue as well as an increase in my ability to tolerate activity.

I use Thermotabs because they are reasonably priced and easy to find.

4. Smart WaterIt makes you smart, right?

The amount of electrolytes added to smartwater are not incredibly meaningful to someone with POTS, but I figure I can use all the help I can get.

Even if it is not enough to make a huge change, I have to drink a lot of water, so it can't hurt to drink water with a little extra kick.

If nothing else, I get a placebo effect from smartwater, and I'm ok with that.

5. Banana BagOk, so I am not affiliated with BananaBag Oral Solution in any way and I am not making any money or any commission off of this.  However, I have also not tried this product.

BananaBag makes my list for two reasons.

One, they took the solution emergency rooms use in IVs to treat dehydration and vitamin deficiency and made it into something you can drink at home (or on the go).

Secondly, through the month of October (Dysautonomia Awareness Month) they are donating 100% of their proceeds to The Dysautonomia Advocacy Foundation AND offering a 25% discount with code BBDAF25.

So, I think we should all try this product this October!




I hope these tips keep you or someone you love well hydrated this October.

Remember to wear your turquoise!!



 Are you Celebrating Dysautonomia Awareness Month?  What are you plans?  Do you have POTS too, or another type of Dysautonomia?  How do you usually hydrate?  Do you think it helps?

I'd love to hear from you in the comments below!! And as always, if you enjoyed this post, please share it :)


Wishing You Healing Hugs And Hope,

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I've been pretty sick.  From the very beginning of February until very recently, I was essentially bed bound.

My Postural Orthostatic Tachycardia Syndrome (POTS) symptoms were completely out of control.So...

I started getting intravenous (IV) hydration a.k.a. saline infusions once a week.
 My cardiologist, who specializes in POTS, prescribed them and faxed the prescription to my local primary care doc who also doubles as my migraine specialist.

My local doc rewrote the prescription so I could have the infusions locally, as my cardiologist is about three hours away.

That would not be a convenient weekly drive.

It wasn't horribly fun to get a liter of saline over 3 hours once a week, but I only did it four times.  
I went to two different infusion center locations, the first in the downtown hospital location, and the second at the newer more suburban hospital location.

The downtown location had nurses more skilled at starting the IV, but the newer location had private rooms and personal heaters.

Why are hospitals always so cold?

Anyhow, the saline infusions... HOLY COW!  They worked!I'm not back to my most active self yet, but I am not using a wheelchair anymore either, so I consider that a win.

I haven't had any weakness or trembling in my legs since the saline infusions.

I have even been able to start physical therapy.  I also have Ehlers-Danlos Syndrome (EDS) with hypermobility so physical therapy is important not only to combat deconditioning but also to protect my joints.

The saline infusions aren't a magic cure.At least, I wasn't magically cured by these saline infusions, but they have gotten me back on my feet.
Now that I am able to be out of bed, I can do the work of reconditioning my body in a healthy and safe manner.
This should lessen my experience of symptoms from both POTS and EDS.

It's awful being sick in bed and feeling stuck there, knowing you have to get up to get better but you just can't do it.
And all the while, you know that lying in bed, or being stuck on the couch, or in that wheelchair, is only making your body weaker, sicker, more rundown.
 It's the worst.

I know what it's like when your chronic illness backs you into a corner.
And, I know what it's like when no when understands that all you want to do is to get up.
You fantasize about being able to do housework.
You daydream about being able to go back to work or school.

If you have POTS, IV hydration might be a tool for you in an acute situation.  Finally... something to help pull us out of those downward spirals.

I can't guarantee that you can find a doctor that is open to to saline infusions, and I can't assure you that your insurance will cover them.
And, if you get past all that, I won't promise that saline infusions will work for you, because we are all so different.

I can tell you that IV hydration helped me a great deal after months of decline, and it has helped other POTS patients too.  It is researched backed and very low risk.

 Read about it

Maybe you can find a bit of hope in all of this.
Sometimes things do get just a little bit better.

Sending you Healing Hugs and Hope,
 

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Hello spoonies and friends!

Please enjoy this silly lyrical poem about my trusty heating pad and the pain relief it brings me.

I bet some of you can relate, and hopefully you'll have a chuckle or two.



An Ode to My Heating Pad


Oh, heating pad,
 your warm hugs ease 
my aches and pains.
I need your healing squeeze
When my feet get cold,
or when I get one of my migraines.
  


From arthritis to subluxations,
you've nursed me through.
When I find my muscles tied,
I cuddle up to you.
It's so nice and toasty,
with you by my side.


Due to my poor circulation,
I'm often very cold.
When my thyroid acts out,
you are too hot to hold.
Still, you know I'll be back,
  it's your gentle hugs I'm mad about.

If you love your heating pad so much, why don't you marry it? Well, maybe I will....




So what did you think?  Did it make you laugh?  I hope so :)

Are you a heating pad person, or and ice pack fan?  I'd love to know!  Leave a comment!!

Wishing you Healing Hugs And Hope

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Having multiple Chronic Illnesses isn't very fun.
But, you know what is?

Candy!
So I am going to try and choose a candy bar to represent each of my main diagnoses (Lyme, POTS, EDS, CFS, Fibromyalgia).
This post contains affiliate links (pictures) see full disclosure under "links to other sites" or scroll to the very bottom of the page

 Lyme- Take 5 by Hershey
Lyme throws so many symptoms your way, it's hard to tell what's going on at any given moment.

It affects every body system, and it's co-infections bring along their own lists of complications.

It is called the great imitator for good reason.
With so many symptoms attacking every body system, it is easily confused with other illnesses like lupus or MS.

I chose the Take 5 bar to represent Lyme because it has pretzels, peanuts, peanut butter, caramel, and chocolate.

It's like the candy bar is attacking all your taste buds the way Lyme attacks all your body systems.  You get salty, sweet, crunchy, smooth, everything all in one candy bar. 
Too bad lymies don't eat sugar.


POTS- Curly Wurly by CadburyWhen you live with POTS, aka, Postural Orthostatic Tachycardia Syndrome, your heart rate and blood pressure do a funny little dance, spiking and falling at inappropriate times.

It causes a host of symptoms, most noticeably fatigue and faintness, but it doesn't stop us because we won't let it.

The wavy curls of the Curly Wurly bar remind me of the rising and falling heart rate and blood pressure of a POTS patient.  
They go up and down and up and down, and sometimes, as people with POTS, when we get up, we also fall down.  But, we always get back up again!


EDS- Laffy Taffy by Willy Wonka
EDS, or Ehlers-Danlos Syndrome, is a genetic disorder that makes the connective tissue more elastic.

Our tendons and ligaments are extra stretchy, so it's harder to keep our joints in the right place.

If the joints move too much it can cause damage to the cartilage, tendons and ligaments, or bones.

The Laffy Taffy represents the stretchy connective tissue.  
FYI: I have EDS type three (hypermobility) and that's what I've described here.  There are other types including types that involve vascular impairments.


CFS- Zero by Hershey
CFS, Chronic Fatigue Syndrome, is debilitating, and not well treated or managed. 
I chose Zero because when you have CFS you have zero energy.  
You also have zero patience for people giving you advice on how to manage your condition.

You definitely have zero time for doctors who tell you there is nothing wrong with you or who refer you to mental health services.

CFS was one of my first diagnoses and there is just zero out there.  
I don't tell most doctors I have CFS the first time I meet them, because if I do they make certain assumptions about me right away.

When you're living with CFS it's easy to feel like there is zero help or hope for you, and that needs to change.   Fibro- Milky Way by Mars
When the fibro, short for Fibromyalgia, pain flares, there are other symptoms too, one of which is brain fog.

Brain fog is a symptom that can be attributed to most of the chronic illnesses I am diagnosed with, so when I experience it, I can't be sure which illness is causing it.

Regardless, Fibromyalgia sufferers like me, often find themselves spacing out.

I'm not sure where I go when I stare into space (it feels like nowhere) but the Milky Way wouldn't be a bad destination.
I certainly have my head in the clouds these days.





I hope you've enjoyed this fun post about a not so fun topic.  Maybe you had a laugh or learned a little.  What candy do you think best suits your chronic illness?  Why?  Tell me in the comments, I'd love to know!
If you enjoyed this post, please share it!
Wishing you Healing Hugs and Hope,

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   Have you ever heard of the yuru-chara?
If you haven't... They are mascots Japan created for places, industries, and events both public and private.

The idea was to boost tourism, and although the goal wasn't quite achieved, people around the globe have fallen in love with these goofy, adorable characters.

They have a mascot for just about everything.
So I got to thinking...What if there was a mascot for Chronic Illness?What would a Chronic Illness Mascot look like?  What traits would this mascot have?

Well, I am proud to announce that I have worked diligently on behalf of the chronic illness community to create a number of mascot suggestions.

Introducing, THE
The Sensory Overload Ostrich

When it is all too overwhelming and you can feel absolutely everything (and all of those everythings hurt), your chronic illness mascot is the Sensory Overload Ostrich.

If this bird gets too overwhelmed he buries his head in the sand and says "Nope!" "not today."

It is important to understand that the Sensory Overload Ostrich is not lazy, or cowardly, nor does he give up easily.


This mascot is a master of knowing and respecting his body's limits.

The Imaginary Unicorn

When someone tells you that you look too good, too young, or too whatever to be sick, the Imaginary Unicorn feels your pain.

This mascot is for all the Chronic Illnesses that are also Rare Illnesses, or just badly understood.

She understands when you get a psych referral for the hundredth time and when you always have to educate your doctor on your illness (never the other way around).


The Imaginary Unicorn is a warrior who is always questioned and never understood, but holds her ground, confident in her own existence even when no one else is.  

The Invisible Iceberg
Only 10%  of The Invisible Iceberg is visible above the ocean surface.  The rest is hidden underneath the water.

This mascot represents the isolation and loneliness of Chronic Illness, as well as how much we keep hidden from those we love and those we wish to connect with.

The Invisible Iceberg, like us, does not mean to be, or want to be, secretive.  It simply is.

In dealing with ongoing health issues, often we need to be alone, or we cannot go out and socialize for one reason or another.

This is not intentional and it is certainly not by choice.  It simply is.

This mascot is a reminder to others that people with Chronic Illnesses may not always look sick or be symptomatic all the time.  Think beyond your basic assumptions about illness.  People of all ages and appearances can become ill.  Most people will only be out socializing when they feel well, so you will most likely only see them when they feel their best.  Consider all the time you don't see them.

The Hovering Humming Bird

Ever feel like you are working soooooo hard, but getting NO where?

yeah, me too.

The Hovering Humming Bird understands.  This little mascot understands that when you have a Chronic Illness you have to flap your wings so hard and so fast just to be able to perform day to day tasks.

The Hovering Humming Bird has to worry about maintaining a certain metabolic rate, and we have to worry about our nutrition, our medications, our medical bills, insurance claims, disability claims, being able to work or go to school, energy, and making sure we don't get sick!  If you catch the bug that's going around, you slide all the way back to square one, and it will take months and months to build yourself back up again!

Humming Birds are an amazing feat of nature, and so are our bodies no matter how frustrating they are at times.  
Yes, The Hovering Humming Bird is a good mascot because it has to work harder than other birds to maintain altitude and metabolic rate, as those of us with Chronic Illness work harder than healthier people to maintain occupation and health.  However, this mascot is also appropriate because it mirrors the awesome natural ability of our bodies to maintain our health.

So what do you think?  Are they yuru-chara worthy?
What Chronic Illness mascot would you create?
Would you create a different type of mascot?
What do you think of mascots?
Let me know in the comments!!!Cheers to the Mascots!Sending you Healing Hugs and Hope,
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Organizing your medications can be a daunting task especially if, like most people with a chronic illness, you take multiple medications at different times throughout the day.  I've tried everything to keep my prescriptions and other medications organized.  I think I've owned every pill organizer ever created.  It can be rough managing refills or even just trying to find physical space for all the bottles.

Here are some pro tips to make this process a bit more manageable.
This post contains affiliate links, for more information see the full disclosure under "links to other sites" or scroll to the very bottom of the page.

Keep All Your Medications Especially Prescription Bottles in One Place 
This may seem at first like a no brainer, but it can be easy to scatter small bottles around the house.

Pretty soon, if you aren't careful to corral your bottles into a single designated area, you start to lose them in your car, a purse, a suitcase.

Basically, it doesn't take long until each medication is in a different place and you have absolutely no idea where anything is.

Not a great place to be.  So let's avoid it!


I separate prescription and nonprescription medications as well as any medications that I have a surplus of.These three categories allow me to easily and visually evaluate which medications I may need to refill or purchase more of soon.

And... that leads me to my next helpful hint!

Keep Track of Those RefillsOne great way to do this is with an excel sheet.  Make sure to include the name of each medication, the number of refills remaining, and the date they can be refilled.

Some people may prefer to record these dates in their calendar or in a separate notebook instead of an excel sheet (that's fine!).

BONUS: When you go to the Doctor's office you will have a list of your most recent medications updated and ready to go, all you have to do is make sure you include the dosages and print it out to take with you!
You may also want to keep track of pre-approval dates in this area of your records if you have any medications that need annual pre-approval.  One of my personal tricks is to highlight on the physical bottles where it says "no refills left" so when I get down to no refills, I have a visual reminder every time I fill up my pill case to call the pharmacy to get more refills.

Did you catch me mention that I fill up a pill case every week?

Can you guess what my next tip will be??

Use A Pill Case, PeopleTrust, me when I said I've tried every way of organizing my medications, I mean it.  At least half of that time I spent trying to avoid using a pill organizer.

I get it, taking medication everyday is obnoxious enough, I didn't want to have to sit there and play with them and spend time sorting them.  It just felt cruel and unusual.

The thing is, pill organizers work. I still don't particularly enjoy filling mine every week, but I do it, and here's why.

Once you're on more than one medication (and I'm on a bunch), taking medications directly from the bottle is time consuming and chaotic.

It is much faster to open one slot of my weekly pill container and to take the pills within than to go through all my bottles, find the ones I need for that time of day, and take the appropriate amount.

Also, once I have taken the dose, I have the visual of an empty slot to let me know that I did in fact take the dose. That way if I forget or am unsure if I took a particular dose, looking at my pill container will tell me if I took my medication or not. If I were taking my medications directly from the bottles, i would not have that certainty.


I use a weekly pill organizer with slots for Morn, Noon, Eve, and Bed.  This works for me because I take medications four times a day and it has large slots that accommodate all of my medications.

Pill organizers come in all shapes and sizes and I have used AM/PMs with only seven slots, and cases that separate AM and PM, as well as many variations on size depending on my needs at the time.



I recommend a single dose case as well for when you are traveling or need to take a dose with you anywhere.

PRO TIP:  Look for organizers with compartments that seal tightly and always carry it in a sealed ziplock bag.  Having a week's assortment of medications crushed into the bottom of your bag or luggage is not a fun situation.

I hope this helps!  Do you have any insider tips for organizing your medications?  Please share them in the comments below!!Sending you Healing Hugs and Hope,
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ca-pub-3805058999900394
Welcome to Healing Hugs and Hope!  
It is my goal to create a space for people fighting illness, 
and their caregivers to a find supportive community and feel-good content.
They say laughter is the best medicine, and we believe that here.
Take a moment, a breath, and enjoy!
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Today I want to share how I feel about anyone living with chronic illness.  I admire you.  I know first hand how rough this road can get.  We are warriors and survivors, and sometimes we don't appreciate or celebrate ourselves enough.  So today and everyday let's give ourselves some love and appreciation!If you have a chronic, rare, or invisible illness, I admire you. (extra points if you have all three!)
If you take care of someone or love someone with a chronic illness, I admire you.


If you got out of bed today, I admire you.
If you couldn't get out of bed today, I admire you!


If you got to the doctor's office, or scheduled some appointments today, I admire you.
If you had to skip the doctor and stay home, I admire you.


If you did some kind of housework today, I admire you.
If you left the dishes dirty, and the laundry undone, I admire you.


If you took care of children today, I really admire you.
If you needed to be taken care of today, I admire you. (and I'm right there with you)


If you went to work or school today, I admire you.
If you couldn't go to work or school today, I admire you (me either).


If you cooked for yourself or others I admire you.
If it was all you could do to order a pizza, or if you had the courage and self love to ask someone else to cook for you because you could not, I admire you so much.


If you took all of your medications, and hydrated, and ate enough I admire you.
If you missed some meds, or a meal, because you're sick or busy or can't afford it, I admire you.


If you stayed in your pjs all day and watched Netflix I admire you.  I know this is no vacation for you.
If you got up today and were able to be "productive" I admire you, and I hope it lasts, friend.


I admire you all and you are all in my hearts as we walk this path of chronic illness everyday.  I am proud of you for doing your best everyday no matter how large or small that best is.  I admire you, please take a moment to admire yourself no matter what kind of day you've had or what you've "accomplished".
Sending you Healing Hugs and Hope,

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How many times has someone told you to "stay positive"?  As if your illness could be cured if you simply refuse to acknowledge how rotten it is to hurt 24/7 and have friends, family, and strangers crap all over you.  Thanks for the invaluable advice.  I was once told by a friend, after pouring my heart out to her for hours about my life and my symptoms, "you just need to change your attitude."  But, she had no idea what kind of attitude I had because she was not part of my life or my health journey.  That is my huge issue with this emphasis on positivity.  

It's just another way to shut us upWhen someone is done hearing about our chronic illness woes, they tell us to "be positive."  What they really mean is stop telling me about all the things in your life that make me sad or upset.  When people ask me what has been going on in my life I have a few options.  I can be honest and tell them that I have been sick and am mostly depending on a wheelchair.  I can say I am 26 and more dependent upon my parents than ever before in my life and that scares the hell out of me. I can say I'm starting a blog and applying for disability, or that I'm seeing new doctors and never giving up as long as I breathe.  Or, I can tell them what I usually say, "not much, I'm doing pretty well."  If you say nothing and smile people like you a whole lot better than if you tell them an unpleasant truth.  The concept of positivity centers more around this norm than around any concern for anyone's health or well being.  People don't tell me to be positive because they think it will help me heal.

It simplifies our emotionsLife is complex and so is chronic illness.  Some times I find myself feeling deeply hopeless for my future and overcome with feelings of grief and anger over what this illness has taken and will take from me.  That is okay.  Feeling those things is okay.  It is natural, and as long as I don't stay in those feelings forever, it's good for me to allow myself to feel them.  The pressure from society and the people around us can sometimes make it feel like any negative emotion is completely taboo.  I hate that.  I have experienced a depth and range of emotion on my health journey and none of it has changed the optimistic person I am.  I am allowed to be upset or to feel a negative emotion and still be a person with an overall positive outlook on life.  Life is a rainbow, so don't paint us all a positivity pink.  It's really not my color.

People with chronic illness already live positivity Most of the people that I have met or spoken to that have chronic illnesses are incredibly badass and inspiring and people treat them like dog poo.  They fight hard and never stop fighting through procedures, pain, financial strain, emotions, constant criticism, social isolation, and so much more just to work, play, do chores, and contribute like everyone else.  I think that getting up everyday when you already know what challenges you are going to face takes a hell of a lot of positivity.  To keep going to doctors appointments after you have been turned away and ridiculed by so many doctors before, takes positivity.  To keep trying to get back to walking, or working, or school, or cleaning the dishes again takes insane positivity, especially when you know that you'll lose the ability to do it again the next time you get sick, and have to start all over.  My every day runs on positivity, so I take it very personally when someone tells me that the key to my cure lies in positivity.  I already know what role positivity plays in my life because I live it everyday.

It's minimizingOne is usually told to "be positive" after trying to relate to someone else some kind of issue.  This instructive phrase minimizes the individual's pain and concerns.  It also gives the impression of not having listened to what was related.  Has anyone ever said to you, "I just want you to listen, I don't want your advice?"  I understand that sometimes people are just trying to help or to think of something to say, but it is infinitely better to just really listen and not try to solve any problems.  Even if you say that you don't know what to say that is better than saying the wrong, potentially hurtful thing.  Try to listen to your friend or family member with a chronic illness.  Put yourself in their shoes.  Think about how you would feel in their situation before you say anything, and shy away from giving advice of any kind unless they specifically ask for it.  I'm willing to bet they go through a lot that they don't tell you or anyone, because no one wants to know what our lives are really like.  It's depressing and no one cares.  We are too sad to talk about in this culture of positivity.

Wishing you Healing Hugs and Hope

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