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 Morning After (Payday)… Fun Isn’t Free

I did something yesterday, oh yes I did. Something normal, something fun.

I treated my sister for her birthday to go see Coldplay in concert. Firstly I had to make the decision how wise it was for both of us for two reasons; financially being that money is tight and medical bills are high, and whether I could justify using some of my personal savings on an extravagant birthday present. Second being that we both deal with chronic illness I had to weigh how much we would be affected by a long night out and take a gamble (being that I purchased tickets ahead of time) whether we would both be well enough to go when the event came. 

I went ahead and did it because Coldplay was here on the weekend right before my sister’s birthday (which seemed fortuitous) and she loves them enough I figured we would make it happen no matter how we were feeling.

We got nosebleed tickets (hey closer tickets were outrageous!), but it turned out fine because it was a great venue complete with fireworks, laser show, and audience armbands that lit up. It was fun.

My sister is happy and grateful and this is one the nicer gifts I’ve been able to get her. Thankfully also we are both having slightly better days with health the last couple weeks, meaning we can manage a bit more.

But, the reason I’m writing this is because this is a chronic illness blog, and as fellow sufferers know after fun comes….. pay day/days. 

It began actually even at the concert last night; I started feeling tired, and even in the middle of something fun I was enjoying I started wishing I could be home in bed knowing that even after this thing is over there would be a long walk to the car, sitting in traffic, and a long drive home.


This morning as I lay in bed writing this my entire body hurts..a lot. I’m swollen and puffy and completely wiped. Not only do I have the deep aching pain in every joint but I also have the deep tissue burning pain that goes with the autoimmune (Mast Cell/histamine) reactions of having some different foods yesterday.

Yes, this is “Pay Day”, and I know there will be more than one of them and I need to be careful the rest of the week.

So, is it worth it? I think so. Simply because I do things so seldom, and it feels good to be more normal once and a while; it gives me hope that one day the normal days will multiply and I can handle more, maybe even… gasp, having more than one activity on a weekend. We shall see.

For today though I’m glad my sister had something special for her birthday, even though she will be having her own pay days to follow. I will rest, recoup, detox, and try and make it to something tonight I promised some friends I would attend… yes, I am going to attempt two things in two days. Prayers appreciated