The Judgement & Scrutiny Of Living With Chronic Illness 

(*disclaimer at the bottom of article)
Judgment. 

Scrutiny.

 Those words immediately evoke feelings of negativity. Living with chronic illness is negative and difficult in itself, but have you ever stopped to think that almost every person batting a chronic illness also gets “insult added to injury” (literally) by being judged and scrutinized in everything they do?….. What they post on social media, every choice they make, every event they attend or don’t attend, everything they eat and every purchase they make? Yes. This is a huge part of living with chronic illness. 
   Can you imagine suffering from a condition and all of a sudden even “normal” activities and decisions come under the watchful and judgmental eye of everyone you know?
What do I mean? 
Example: “Shelley” suffers from chronic Lyme. All her friends and family know this. They know treatments are expensive and Shelley spends a lot of time at the doctor. Shelley also says no to a lot of family functions and activities with friends. Shelley also shares her struggles on social media and everyone knows she is struggling financially as well due to all her medical expenses. Some of Shelley’s family are very negative; they knew Shelley when she was active and vibrant and can’t understand how this sickness seems to go on and on without end. They think her posts about illness are attention-getting and that Shelley is needy, especially being that she is single and they think therefore she is trying to get sympathy. They think she is pathetic. Some of them let her know and express their anger. Some of them no longer speak to her at all.
Shelley also feels like she can’t win when it comes to socializing….
(NO) When Shelley says no to an event or dinner (or has to leave early or rest in the middle):
People think Shelley is being a drama queen again, or lazy, or being anti-social, etc. 
“She always says no so why bother asking”
“She is so self-absorbed with her problems. If she just got out more and acted normal she would feel better”
“Sickness has become Shelley’s identity. If she just stopped owning it she wouldn’t be so sick” 
“Shelley is not as sick as she thinks she is. Lyme is an excuse”
“Shelley has some kind of social disorder and is using sickness as an excuse”
“There she goes again, lying on the couch in the middle of a party. Apparently she wasn’t getting enough attention…”
(YES) When Shelley says yes to an event, or dinner: People think
“how can she be sick in bed yesterday and out today looking normal today?”
“She is such a liar, she said she couldn’t go out his morning and there she is tonight out with friends”
“She must be getting better, finally this Lyme thing is going away”
“You look good! You look healthy, you must be better”
“How can she afford to go out when she was just posting her Gofundme yesterday?”
“All this posting on social media about being sick, and yet when I see her she looks fine”
“Should she be eating that?”

You see I am Shelley. If you are ill and reading this, you are Shelley. And I know dozens and dozens of Shelleys that have the same experiences. 
Most people don’t think twice about going out to eat, taking vacations, hanging with friends, going to movies, buying a pair of shoes…

But when you deal with chronic illness things are a little different. Have you ever considered how much judgment someone who is sick receives? And this is on top of all the physical, emotional, mental, spiritual and financial suffering. 
That’s why I write. Because most judgment comes from naivety and simply not understanding. 
I have to deeply think before I post anything regarding my illness; TMI? Who’s my audience? Sharing info with fellow Lymies versus relatives that are going to roll their eyes at another health post?

Am I going to get negative backlash?

Are people going to get the wrong idea?
I also think twice before I post anything about going out, being with friends, or anything that has to do with spending money….. 

You see guy can buy new shoes if you need them without a second thought. But if I do I have to assess who might judge me knowing that I struggle financially. See what I mean? And I also don’t want to hurt that friend that I said no to yesterday when I felt super fatigued when they see me out with someone today because I rested and feel a little better.

I also struggle with guilt and and moral questions whenever I do something fun or spend a little money. Am I “allowed” to have fun? Can I justify a purchase for myself? Even though I am. It by any means extravagant (I rarely go shopping, buy clothes, and almost never eat out) I feel funny when I do and feel I have to answer for myself to everyone I know. 
Conclusion. 

This isn’t a perfect essay, and I didnt touch on a lot (including judgment and negativity from the mainstream medical community that doesn’t understand certain chronic illnesses), but there are tons of bloggers out there and they are doing a great job being a voice for this community. All we can do is try our best, and have an extra dose of grace as we raise awareness to those who would judge us. 
*Please note that this essay is on the topic of judgment and scrutiny; There are a LOT of kind and understanding people who do take the time to learn, ask questions, talk and give support. Thank you all my friends and family that fall in this category. 💚

  

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Fight Candida….Naturally

How is is that I have not seen this article until now ?!?!? Food Matters wrote this excellent article on how to beat candida naturally, diet (of course) but also some things that feed and fight it that I didn’t know about.

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http://foodmatters.tv/articles-1/how-to-overcome-candida-naturally

Just ‘Cause You’re Sick Doesn’t Mean You Can’t…..

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Yes you are in bed most of the time. Yes you feel like that possum that got hit by the truck. Yes you are kind of stuck and down in the dumps. You can’t do most of the things you want to do, so it is easy to get depressed, feel worthless and a burden on society. We’ve all been there, no matter what point in our illness we are in right now.

So since it is so easy to focus on the “can’ts” (which lead to feeling worthless), here are some “can’s” you can do right from your bed. And please don’t put these ideas down as cheesy, maybe some are but it’s the little things that sometimes make the day brighter.

 

Image1. Write Thank You Cards “just because”. Are there people in your life that you love and appreciate? How good would it feel to surprise them with a random thank you. Don’t be afraid to fill it full of detail about everything you love about them. And don’t be afraid of the digital Thank You! Are cards a little passe for you? Or maybe you can’t even get to the post office? Send a Facebook message or tribute post praising your friends and family for how fabulous they are.

 

Image2. Movies! Make it through the AFI top 100 Films list….or Best Musicals…or whatever list you choose. Okay I admit to growing up watching a lot of movies, but it is something I really enjoy and I appreciate the old ones as well as the new. Sick in bed might be the perfect time to be able to say  to someone “Why yes I have seen every film starring the great Cary Grant. Who of course was born as Archibald Leach in England and was a circus performer.” (yes, bedridden=time) There is no shame in being a film aficionado! (and may I add that binge watching television series is a lot of fun as well). Make a check list and tick it off as you go, at least you will feel accomplished 😉

 

Okay, these next 2 might be tough for those suffering cognitive issues (I went through years of struggling with reading)

Image3. Catch up on the Classics. Pride And Prejudice, Moby Dick, Tom Sawyer…….. there is a ton of classic literature out there that most of us haven’t read. Sick in bed is the perfect time! Now like I said I went through years of having trouble reading, When I tried I would re-read the same sentence or paragraph over and over and just not be able to take it in. Plus I had Lyme-induced dyslexia and Lyme-induced reduced visual acuity. So what I found (that I still love) are audio books. Especially now with smart phones this makes audio books very accessible. Audible (an Amazon company) has basically saved my life!

 

Image4. Discover art. Whether you are artistic or not everyone can enjoy sketching or drawing. Get some good art paper and some nice pencils, or even water colors or pastels. You might awaken the artist in you.

 

Image5. Scrapbook. Get colored paper, stickers, fancy scissors, glue sticks…. have fun.

 

Image6. Photography. Subject matter is of course limited in your bedroom, but if you are able to take short walks or sit in the back yard just play around taking photos. Try different angles and lighting…. lie on the ground and look up, walk a few steps and look down…you will be surprised at the hidden treasures all around. Play around with your photos editing on your phone or computer. The possibilities are endless.

 

Image7. Get some fish. Fish are easy no-brainer pets. If you don’t want to mess with filters and taking on too much work, get a Betta fish, just make sure the tank isn’t too small. Fishy likes space too after all. Fish are therapeutic to watch and it is nice having something to care for.

 

Image8. Learn. If your poor diseased brain is up to it find subjects of interest and learn about them online. The information out there is limitless.

 

All these ideas are just a starting point. I think just making a list that fits the parameters of where your health is that you can check off will give you a sense of accomplishment. Whatever you decide to do take the step and do it, you deserve it.

10 Of The Causes Of “Fibromyalgia”

10 Of The Causes Of “Fibromyalgia”

As (most) of us know Fibromyalgia is a symptom not a disease itself. Here is a really intelligent list of some of the causes (link in title). One not listed here is of course Lyme which causes Fibromylgia-like pain, especially while herxing.

Diet For Autoimmune Diseases Published Study

 

I had to share this post thanks to Paleo Mom. It is a study on the effects of a Paleo Autoimmune Protocol for patients with autoimmune diseases. I follow a pretty strict elimination diet that falls into this category.

http://www.thepaleomom.com/2014/02/first-clinical-trial-using-paleo-diet-autoimmune-disease.html

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