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 💚

Is Hope A Burden? And Accepting Circumstances…

I have been in a different place as of late; all I can say is that there has been an internal shift and this last round of die-off did something to me on a deep level.

As you know (I think at least) I had kind of a double whammy that began with starting a cellular detox May 20th followed by treatment by my LLDC May 23rd where he found that the three B’s were in remission, but that I had Epstein Barr, Non-STD Clamydia, Erhlychia, Lyme Coinfection virus A and C, plus Protozoa.  The first several days after treatment I was fine, felt great in fact and even had some activities with friends. But then I got hit hard and went back down the rabbit hole as I call it. I had been experiencing horrible body pain (much worse than the norm), bad enough to keep me from sleeping at night and causing several bouts of tears, both from the pain and frustration. Also any energy I had got snuffed out, went into a foggy place again, swelling worse… You know, all the usual stuff. 

Somewhere in the midst of this the hopeful light in me went out; it’s just been too many years….too much struggle. Thankfully I felt a slight lift a few days ago and checking the calendar it coincided almost exactly with six weeks post/treatment (they always say die off runs about six weeks with this therapy). I am still not feeling great but I think (hope) this accute bad spell is behind me. But I am left on the other side of this most recent storm a little different than when I went in. It’s hard to explain; I have been through the mind-numbing years when things were unbearable and I was in a state of apathy, grieving and hopelessness, simply surviving one day at a time. I have been through the period following this of awakening and letting go of grief and the regrets of lost time and loss of life and having so much hope for the future… Letting myself dream again. But now I seem to be in a place of complacent acceptance where hope itself has become a burden and not a joy. 

I guess I need to clarify that I have not lost hope in the Lord or the fact that He has good things planned for me or is doing good things, not at all. By His grace I have grown so much and continue to grow. I am blessed by a family I love dearly and we all weather this ongoing storm of chronic illness together because we are all in the same boat, it’s drawn us closer. I am blessed by some of the best friends a person could possibly have. I am blessed by my dog who is a gift from God (Shiloh’s Story). I am immensely blessed by my current job and the people I work with. But I am coming to recognize that some things I hoped would happen in my life are not happening and may never happen, and living every day thinking about what may never be is exhausting. So I am mentally closing the door on finding love, having a family, being “normal”, traveling, all the stuff that people do….  If God chooses to open that door that’s up to Him and it will be welcome, but I need to accept this little room and this life the way it is and just live my best for God one footstep at a time, one encounter at a time. If an online platform for fellow I.I. Sufferers is my calling and my little window out into the world, I have to be okay with that.

No I can’t be financially independent. Yes I have limited energy and have to manage my spoons. Yes life is a yo-yo with periods of brief normalcy followed by times of scraping by. Folks I’m just tired, and desires for the big stuff has kind of been squelched. 

Is this a good thing or a bad thing? Honestly I’m not sure, and the answer may be a little of both. I have been reminded a few times lately of Joni Earicson Tada and her story and her amazing minsistry. She had to come to acceptance of the fact that she would never use her arms or legs again (something that is unimaginable to me) and she has lived in so much grace and love. She has touched millions and that never could have happened if she grew bitter or kept striving for healing that would never come. I can’t think of a better role model than Joni. Who am I then to think I deserve better than this life of struggle I am living? Even if I am single forever and I never have a typical/normal life or the things most people take for granted, Or will never be able to eat everything I want, or do activities I want, if I forever have to pick and choose between things in life according to my energy level, if I have to deal with a certain level of constant pain, fatigue and swelling…I am still blessed and I can do a lot if I just let God do whatever He wants to do with me day by day.

So today after having taken a nap that has (again) become a common occurrence, sitting here on my bed with a bit of deep tissue pain, the usual swelling, headache and fatigue… I recognize I was also able to take a little walk in the pleasant summer rain with my fur baby love of my life, come home to a safe comfortable place to my loving family, and be able to write this post. Life is hard, but it can still be good 🙂


Beautiful slightly stormy sky this evening 

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

A Shadow Of Me

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The past couple weeks have been really tough; after spending a couple months feeling like I had hit a huge milestone in my Lyme journey with more energy, I have again hit a wall.
So about 11 months into my Lyme treatment I was feeling a lot better, had a lot more energy, was actually living again. But for about the past 5 weeks or so I have been struggling horribly with fatigue. I have also had some worse swelling and food cravings. My doctor is not sure what is going on but she ( my natural doctor not my Lyme doctor) thinks something is again blocking my detox pathway and is causing me to slump. Now besides that my body has also been battling whatever viruses are going around, so I think my body is just overwhelmed, and sleeping 9-10 hours on weekends just isn’t enough. Right now I honestly feel like I need to sleep for about two months until I get past this. My doctor wants to run another test to see what is blocking my detox pathway, but of course I need to just survive until I get an answer.
I feel like I had a moment in the sun, and it was my first real light in many years. Now I have sort of stepped back into shadow, and feel like only a fraction of a whole person. I hate “survival mode”, hate it, hate it, hate it.
Okay enough with the tantrum. I know that even though I am struggling I am still better than I was months ago, so I am still grateful. Another thing is that God has been revealing so much to me within these last couple months I feel like my inner self wants to explode out of this weak body and just go in every direction at once. I am afflicted but not crushed, perplexed but not in despair. I am down in body and have momentary sadnesses, but I have had times of unspeakable joy that has never been matched by the good times I have had in healthier times of my life. Thank you Daddy. Better days to come