Chronic Pain And Invisible Illness,Where Is Our Month?

awareThe life of chronic pain and invisible illness is not easy. Often being labeled as exaggerating our symptoms or even faking our illnesses to get attention or even disabled out of work, nearly every single fellow warrior on this journey follows the same path I do: a lonely, quiet, hidden and dark life of pain and co-conditions that we rarely let on. I can be the most bubbly girl in the room and be talking and laughing but on the inside I am in horrible pain. I should win an Oscar at times, I can act that well. I recently was having a discussion with my husband Paul about how every month is now clogged with “awareness”. Before I proceed, I am not ashamed to admit I am a moderate liberal. I am a ‘tree-hugger’ and make no apologies. I have an open mind and a diverse soul. So having ‘awareness’ for things is good. On the other hand, after looking at the list from, citing credit to this site http://www.disabled-world.com/disability/awareness/awareness-dates.php I think we have gone too far. I am, nonetheless,  shocked and saddened that there is no chronic pain month. There is no invisible illness month. What is wrong with this picture, besides everything!

Lets start with just a few examples from each month: In January there is Constipation Awareness Month, Get Organized Month, Glaucoma Awareness Month, National Clown College Month (Yikes! clowns are just creepy!), Oatmeal Month, Bird Feeding Month, Radon Action Month and Clean Up Your Computer MonthNationalMonthHere are a few examples for February there is Bake for Family Fun Month, Great American Pies Month, National Grapefruit Month, National Bird Feeding Month, National Sweet Potato Month, Typewriter Appreciation Month and my personal favorite, Return Shopping Carts to the Supermarket Month.

Here we go for March, some of my favorite choices are: Black Hole Awareness Month, National Frozen Food Month, National Noodle Month, National Caffeine Awareness Month, National Flour Month, National Frozen Food Month and the best one for this month, of course, National Text your Neighbor Month!NationalMonth3On to April. Some of April’s stand-outs are:  National Food Month, National Pecan Month, National Garden Month, Fresh Florida Tomato Month, Records Management Month; National; Association of Records Management Professionals (ARMA), Huh? Records Management Month and National Financial Literacy Month.

For May: National Zombie Awareness Month (as a paranormal enthusiast, I can dig this!), Asian Pacific American Heritage Month, National Salsa Month, National Don’t Eat Cheese Before Noon Month (What?), National Hamburger Month, National Chocolate Custard Month,  National Share A Story month and May is the Month of Man. May is also Uranus Awareness Month… the planet of course! Why don’t the other planets get an awareness month?

Salsa is delicious, but a month to raise 'awareness' of salsa while there is no month to raise awareness about the plight of chronic pain? Or did they mean the other Salsa....

Salsa is delicious, but a month to raise  ‘awareness’ of salsa while there is no month to raise awareness about the plight of chronic pain? Or did they mean the other Salsa….

Sorry... Could Not Resist!

Sorry… Could Not Resist!

This Big, Blue Ball Of Gas, Uranus gets an Awareness Day... Why Not The Other Planets?

This Big, Blue Ball Of Gas, Uranus gets an Awareness Day… Why Not The Other Planets?

Moving to the lovely month of June: We have, Audiobook Month, National Flag Month, National Fresh Fruit and Vegetables Month, National Iced Tea Month, National Papaya Month? (or September) …. that is how the site listed it! National Seafood Month, Turkey Lover’s Month (shouldn’t that be in November?) and National Candy Month

Everyone Loves Candy, But Awareness Would Be Better Served On Those With Chronic Pain and Invisible Illness!

Everyone Loves Candy, But Awareness Would Be Better Served On Those With Chronic Pain and Invisible Illness!

Moving to the dog days of summer in the great month of July: Lasagna Awareness Month (as someone who is part Italian on my Mom’s side and makes a wicked good lasagna, I can appreciate!), National Baked Beans Month, National Blueberries Month, National Ice Cream Month, National Hot Dog Month, National Picnic Month, National Pickle Month, National Tickling Month and my favorite,
National Hat Month. The hat gets a month but not chronic pain and invisible illness. What is wrong with this picture?

August is a great month! So let’s see what we have to appreciate during this month: Catfish Month, National, Dragon appreciation month, Panini Month, National Peach Month, Dirty Harry month, National (Really?), and my favorite, Don’t be a Bully Month (This is a good one! Bullying is awful!)

While I Feel We Have Gone Way Too Far With "Awareness" While Leaving True Issues Out, Some Are Very Important, Like Awareness About Bullying

While I Feel We Have Gone Way Too Far With “Awareness” While Leaving True Issues Out, Some Are Very Important, Like Awareness About Bullying

 

Let’s move to September: Some things we are made aware of in September are, National Sewing Month, Hug a Texas Chef Month, National Preparedness Month (Sheldon Cooper would appreciate this one!), National Bourbon Heritage Month, All American Breakfast Month, National Chicken Month and my favorite National Library Card Sign-up Month

There Is A Month To Raise Awareness About Getting A Library Card, But The Hundreds Of Thousands Of People Affected By Chronic Pain And Invisible Illness Have No Voice

There Is A Month To Raise Awareness About Getting A Library Card, But The Hundreds Of Thousands Of People Affected By Chronic Pain And Invisible Illness Have No Voice

What have we got in October? Here are a few examples: Cook Book Month, Gourmet Adventures Month, National Car Care Month, Caramel Month, National Pickled Peppers Month, National Pizza Month, National Squirrel Awareness Month (Squirrel awareness?), National Stamp Collecting Month and my favorite, National Toilet Tank Repair Month.

In November we have: National Peanut Butter Lover’s Month, National Raisin Bread Month, No Shave November (also Noshember), Good Nutrition Month and my favorite, Vegan Awareness Month

 

There Are So Many Months That Have Awareness Raised About Food, Including Vegan. Where Is The Voice Of Chronic Pain And Invisible Illness?

There Are So Many Months That Have Awareness Raised About Food, Including Vegan. Where Is The Voice Of Chronic Pain And Invisible Illness?

I am going to cite some numbers to give an idea of what the multitude of people suffering from chronic pain. I am then going to take it one step further. It is estimated that (per) http://www.nfra.net/nfra-dr.bennett-brochure.html that up to 11 million people in the USA alone have Fibromyalgia. I have cited the number of 5 million on many occasions, but in all honesty, any way you cut it, it is still a huge number of people. Just to give you an idea, at a small get-together for my birthday recently out of 7 adults, 3 of us (women) had Fibromyalgia. And no, we were not ‘brought together’ by our fibro, one is a neighbor and one is extended family (by marriage). According to http://www.fibromyalgiasyndrome.co.uk/how-many-people-have-fms.html 3-6% of the world’s population have Fibromyalgia! That means somewhere around 200 million to 400 million people worldwide have Fibromyalgia Syndrome. If you put all the people worldwide that have Fibromyalgia, it would fill up the entire USA! There is a “Fibro Awareness Day” on May 12th. A day. Just a day. For upwards of 400 million people worldwide, we get a day. According to the initial page I cited (getting the awareness months), it cites May as Fibromyalgia Awareness Month, but I have been dancing this dance for twenty years, and I know like I know that it is not a ‘month’. May 12th is ‘our’ day that we get to make people ‘aware’. Wikipedia backs this up by not listing May as Fibromyalgia Awareness Month. May 12th is the one day that I guarantee I probably got ‘well’ people to read this blog post. I hope if you are reading it now, at least some of the people reading it are not plagued by any sort of chronic illness. That is my hope and prayer. We need people who do not have this plight to at least have some empathy. Remember, we do not want pity, we want understanding.

There Is A Fibro Awareness DAY on May 12th. But Where Is Our Month? While the Site List May As Fibro Awareness Month, I Have Been Dancing The Fibro Dance Long Enough To Know That is a Good Gesture At Best

There Is A Fibro Awareness DAY on May 12th. But Where Is Our Month? While the Site Lists May As Fibro Awareness Month, I Have Been Dancing The Fibro Dance Long Enough To Know That is a Good Gesture At Best

Moving on to Lupus, this illness is a mean, horrible and unforgiving illness. Two of my closest friends in the world… two strong and amazing women have this condition. Did I mention how brave they are? I don’t know that I could be as brave as they are given what they face. One has fibro along with Lupus and Raynaud’s. There are approximately 1.5 million Americans with Lupus and as many as 5 million and worldwide with about 16,000 new reported across the USA each year. So if you put all the people in the world together with Lupus, they would approximately fill the city of Miami, Florida. There is a World Lupus Day on May 10, but not a Lupus Awareness Month. With all these dates given to food and meaningless objects, this debilitating condition…… like Fibromyalgia…… only warrants a ‘day’?

MS is another sister illness that causes great pain, co-symptoms and is a sister illness to fibro and Lupus. No one knows exactly how many people have MS. Experts think there are currently 250,000 to 350,000 people in the United States diagnosed with MS. This estimate suggests that approximately 200 new cases are diagnosed every week. (Source) http://www.ninds.nih.gov/disorders/multiple_sclerosis/detail_multiple_sclerosis.htm Worldwide, MS affects more than more than 2.1 million  people. So if you put everyone in the world affected by MS in a city, it would fill the city of Paris, France.

There are plenty of other chronic conditions that bring on pain such as rheumatoid arthritis and osteoarthritis, Chrons Disease, chronic migraines (now there is something we need awareness for: migraine headaches!) and so many other things. Let’s go one step further and talk about people that do not have chronic health conditions. For instance one of the top reasons that people go to the Doctor, per Sunny FM Radio in Roanoke, VA and http://www.fool.com/investing/general/2013/08/11/the-10-most-common-reasons-people-visit-their-doct.aspx is back problems. The web site I credit also sites headaches and migraines as being in the top ten reasons people go to the Doctor. As many know besides having Fibromyalgia I have a severely ‘sick’ neck and more recently it was confirmed that I have arthritis through all the joints in my lower back. Since I take frequent falls (and my Doctor is afraid I will break a hip if this keeps happening), a pinched nerve and possible disc/s herniation in the lower lumbar reason is suspected and I am awaiting an appointment for an MRI scan of the lower back. Therefore, even if I did not have fibro, I would still be in a lot of pain. In other words, chronic pain is far from being just a ‘chronic condition’ issue. Someone who is otherwise healthy can have a back, neck or issue in another area of their body. My Uncle is a perfect example of this. Knocking on the door of seventy years old, he is in great condition as far as his heart and overall health. He does have a lot of pain, however, in most part due to a not so successful back surgery. He also has a lot of nerve pain (nueropathy which can also affect diabetics). There are people that have been hurt in accidents and have chronic pain for the rest of their lives. I could keep listing instances of chronic pain, but I am confident I have made my point.

pain

We have become a politically correct society that puts importance on many things. I am not saying that many of the subject cited are not important. However, I do believe many of them are a bit overkill. I feel the many voices of chronic pain and invisible illness, as always, goes unheard. Many people that have never experienced this first-hand assume people that live in pain are just wanting attention, drugs or to not have to work. While I am sure there is a small percentage that fall into that description, the several hundred fibromites I have and warriors on this long, painful road we travel are anything but this sad and unfair description. It is time we get an awareness month for our voice. I hope it happens soon. Until next time, K.   This post is Dedicated To The Memory Of Helen Winstanley whose walk on this earth ended August 2013, But whose Soul Will Forever Dance In Our Hearts And Who Will Forever Watch Us In Heaven. Rest Sweet Angel, for you have So Earned those wings!

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8 thoughts on “Chronic Pain And Invisible Illness,Where Is Our Month?

  1. fabulous blog.. i agree 100%.. we need our awareness month and soon… there is not enough awareness out there about any of the invisible illnesses and to only give some of the a day out of the yr is insane.. who can learn anything about these illnesses in one day? Our voices must be heard!!

    • Yeah, that was a funny one! I liked “Clown College Month” and “Return a Shopping Cart” Month! Yet no month for chronic pain. Even those with no ‘illness’ associated with their pain are included int that. Criminal it is! Thanks for reading!

  2. How can I convince my GI to refer me to surgeon for evaluation to get ileostomy? After years of laxatives my colon does not want to work at all. I had colon function test which showed nothing wrong, just very slow transit. Nothing works–not water enemas or Fleet enemas, prescription laxatives, magnesium citrate, etc. I am miserable & so desperate. I pray for BMs. I want to have spontaneous “natural” BMs like I did before 2002 when I was prescribed Kristalose. I took it every day for 10 years along with magnesium citrate. I practically lived for BMs. Now I can’t have them at all.

    • This is the way I have gotten results: If one Dr does not listen find another, then another then another. Find a FAMILY DR that will HEAR you. What I do, however, before I go to any Dr is check their ratings on the internet. How well are they reviewed? If a pain Dr gets a few bad reviews, that is generally pill seekers who did not get their fix. I found my knight in Armour by reading dozens of 4 and 5 star reviews that stated things like “He listens; he spends time with me; he cares”. All are so true and then some. If seeking another Dr is not in the cards, Make an appointment with your GI. Take a support person with you and just stand FIRM. SAY, “You have GOT TO help me! I cannot LIVE like this! I need a referral to a GI STAT!!!!!”. Going further, call the department of medicine in your state and see what their suggestions are. Just stand firm tho… Stand firm and insist only for the best. I don’t see why your GI is refusing to do this? Keep me posted!

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