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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The People Society Forgot

Have you noticed how insanely busy everyone is? And I do mean insanely!!! Life is non-stop running from this place to that, calendars are full, people have very little time to invest in each other anymore or cultivate relationships.

It is almost hard to remember days gone by (hey I’m getting old) before cell phones and social media when people actually talked to each other more. They had time for their friends, getting together to visit was simpler… it didn’t involve so much coordination and stress. Oh, and people cared for each other. Remember that? 

Now before I come off as bashing the character of everyone in our western society; I’m not sure who to blame, it just seems to be what happened to all of us, and most people are not unkind or unfeeling, it’s just that they’re so darn busy.

For the chronically ill that have fallen off the conveyer belt of this life that drives, drives, drives and never stops moving or let’s anyone take a breath…. we often feel forgotten. 

Now what’s great is that when you are not well enough to be uber social, cell phones and social media are a life saver, at least in some ways. You see we also have a window into the world that has forgotten us; people that goon hikes, hang with friends, go out to dinner, spend time with everyone but you because everyone else is up and mobile and, frankly more fun.

Ahhh the chronic illness suffer, we are like a low budget B movie that was made 20 years ago that most people forgot even existed, until someone says something like “hey wasn’t ‘_____’ like at that thing with that other person we went to way back when”?

Now you (normal person) may actually think of us from time to time, pray for us, have us run across your mind…. But guess what? We don’t know that!!!!!. 

Silence= I don’t matter and you don’t care. 

Again, I’m sure the person reading this is a good person, and a busy person, but maybe just as a favor to me, when “_____” comes to your mind and you haven’t seen them in a while and you know they are struggling, send a quick text, an IM, or maybe one of those old-fashioned phone call things. 

Please Imagine being too sick to do what you are out doing right now, and instead that you were home alone most of the time,  imagine (some) of your friends staying silent, for weeks, months…. 

Now Imagine now if they weren’t.

Thanks for listening readers 💚

The Recipient Of The “No Reply”

Just some musings for today and food for thought.

It’s the feeling you get staring at your IM messenger and seeing that your message has been read by the recipient, but no reply.
It is the feeling of looking at your phone and seeing that you sent that text…..days ago, but no reply.
It is checking your e-mail inbox and wondering if that e-mail you sent per chance went into their spam folder, or into a digital vacuum, or if (gasp) maybe they are injured on the side of the road having flipped their car because they were illegally trying to answer your e-mail while driving and now they are in desperate need of medical care with their phone just out of reach of their fractured fingers….But the result is the same; no reply.

Yes communication has changed and we now live in a digital age. This is a wondrous thing in that we can communicate with each other like never before, anytime, anywhere. For some this is AMAZING because we see too little of people in person and we are hungry for fellowship with friends. For some I know this can also be an annoyance in that we become slaves to our devices. No matter how you feel about digital communication I want to set that aside for a moment and have you consider the thoughts and feelings of the recipient of the “no reply” (please note I am not talking about those that get back to you hours or a day or two later, I know we are busy).

The things that the No Replyee might be thinking or feeling

1. I don’t matter to you.
2. I annoy you
3. You don’t like me
4. I am very low on the list of people in your life
5. I think you are a rude person who is giving me the equivalent of the silent treatment
6. I have offended you
7. You just forgot
8. I am a stupid/annoying/unimportant/obnoxious/ugly/wasteofspace person and no wonder people ignore me and I should just shut up and not contact people because it puts them in the awkward position of just “try and ignore her and maybe she’ll go away”.

    So, for those who never answer I really do spend a lot of time pondering what is going on in your head; when you see a message in whatever form it came in (especially if it is personally addressed to you) and decide to never reply. No really! I am curious because with dead air I can only guess at what is going on with you, and I’m sorry but with my history of where the enemy likes to attack me I am usually going to default to #8. So this is me really and honestly asking the question to those of you on Facebook who I can see have read my IM…..months ago and never replied, and to those who have received texts and never replied, let me know! I have a lot of grace and I am ALWAYS totally cool with “hey sorry, I don’t have time” or if it’s a question just a quick “no”. You aren’t going to hurt my feelings, but please explain the dead air which for the No Replyee is the equivalent of standing in front of you talking and you just staring back not saying a word. It would seem rude right?

Also please have grace for us, the digital communicators. Especially the vast community of us who have endured isolation due to illness and or distance and being able to communicate with our friends digitally is a beam of light in our world.

So. Am I sending this out into the void? Or by chance will a few reply……

beingignored

A tough day

last night I took my first dose of progesterone;  as my doctors are starting to focus on treating the screwed up hormones side of this autoimmune madness. You are supposed to take it at night because it can make you tired, so I thought “yay it will help me sleep”. Alas it did not aid my insomnia but instead left me feeling tired and heavy throughout the first half of the day. Gravity was pulling down so hard not even matcha green tea, an energy drink and 3 shots of coffee helped much. (Yes I am supposed to avoid coffee and have done so successfully for quite a while, but when you’re desperate….) But I was alert enough to pace through at work, and goodness knows I am used to working fatigued.

  Unfortunately what did give me a jolt in the very early afternoon was pure adrenaline, source: verbal abuse. Being reamed and sworn at by someone for something that is not your fault simply because they are having a bad day, and because they have a longstanding pattern of lashing out in anger, bad language, blaming others when things go wrong (whether it is anyone’s fault or not), not listening to explanations (and really not caring to hear truth anyway)…..defaulting to being cruel, condescending, demeaning and sarcastic….( I could go on). Sad the men out there that put down and belittle women in particular, I will say it is not pleasant. What stinks is this causes me real physical harm with my pulse rate, my cortisol, my headaches, my GI issues and my emotional well being.

Sigh. I prayed through being a targeted victim of said person’s rage because I was the closest target, and instead dwelt on the truth……I am stronger. The Lord is on my side and I wear spiritual armor, none can touch me. 

I have been focusing on victory and overcoming lately; in my writing, devotions and prayer life. When the office emptied for lunch I put warfare into action and I took authority over said person’s office space by praising the Lord and claiming His dominion and authority over the physical space and spiritual realm. All is the Lord’s territory. I also put on praise music. It was a great spiritual cleansing both for myself and the space. Evil has no place where the Lord is praised.

I have a better peace tonight then I did earlier, but it is still hard to quickly heal mental and emotional wounds. Of course I need to recognize that we battle not against flesh and blood but against powers and principalities and spiritual forces. And the enemy does use evil selfish people to attack the Lord’s anointed. I am giving this one to the Lord and asking Him to do the fighting for me and take care of me going forward. 

He is my covering as I continue to regain my health and discover where His path leads next.

So my insomnia fatigue and swelling are up right now and GI stuff has been worse the last week, but spiritually I am gaining in the healing game.

  

When People Put You Down For Not “Looking Sick”…. :P

So how do you explain Lyme disease to someone who thinks you “look fine”?

“Imagine the worst flu you ever had. Then, imagine not sleeping for 3 days straight. Then imagine how it feels when you have something on the tip of your tongue, but you can’t remember it for the life of you.….”

http://www.livinglyme.com/Explain-Lyme-Disease.html

So what does “sick” look like anyway? Hair falling out? Swooning on the sofa? Grey clammy skin? Unable to stand up? Most chronically ill people (including a lot of cancer patients, those with heart disease, etc and other “respected” diseases can look perfectly fine). There are those of us Lymies who do suffer from the above mentioned symptoms…these, and far worse. However for the functioning or semi-functioning Lymie not looking like you are suffering while you are suffering on the inside can be a challenge. To everyone around you you might sound like a broken record and people can get weary of the “unending troubles”.

To those of you who know Lyme sufferers; trust us folks we are weary too! We grow tired of how we must sound to you every time you ask us how we are doing. We hate that question because the answer usually involves the high points and low points of our day (which can change radically), one symptom being better while another one is worse… We know how we sound, we are much more tired of talking about our suffering than you are of hearing about it.

Also know that you are statistically more  likely see us when we are at our best, and those times when we “disappear” off the face of the earth for days, weeks or months at a time are the times when we more than likely are in fact swooned on the couch (tv remote in hand).

Please understand how lonely and isolating this life is for us. ( https://jeanvieve7.wordpress.com/2013/07/15/the-emotions-of-an-invisible-illness/ ) The toll it takes on us not just physically but mentally and emotionally. Some of us feel that we have even lost our humanity and who we are as people, and we want nothing more than to get back to real life.

( http://lymelightfight.wordpress.com/2013/06/25/what-i-wish-healthy-people-knew/  )

Trust us, this isn’t fun and we don’t want to be coddled or get undue attention, only understanding and (hope of all hopes) a cure.

Thanks for listening.

alone-lonely-girl-beautiful-sad-waiting-seaside

Revisiting Word Press

Hello everyone, I have to remind myself to keep active on WordPress because I find I tend to spend more time posting and sharing articles on Facebook. If you would like you can find my page here   https://www.facebook.com/mycolorislyme

Anyway, rather than just reposting this link and missing everyone on WordPress I decided to come here and share. Here is a great article and some videos that come from overseas about two ladies who suffer from Lyme and their struggles for acknowledgement and treatment. (thank you Lyme Disease UK for sharing)

http://www.dailymail.co.uk/news/article-2845997/The-hidden-epidemic-Thousands-Australians-believed-suffering-Lyme-disease-forced-travel-overseas-seek-treatment-government-continues-dismiss-it.html