I encourage everyone to read the article below posted by an editor on The Mighty.
As you may know The Mighty is the leading site for various chronic illnesses and an advocate for that community.
I encourage everyone to read the article below posted by an editor on The Mighty.
As you may know The Mighty is the leading site for various chronic illnesses and an advocate for that community.
Hello Lymies, infected, sufferers, downtrodden… and all other readers;
I am excited to finally share with you a passion project from 16 of your fellow Lyme sufferers: The Lyme Art Book, “Infected/Inspired”
This has been a while in the making, as you can imagine it wasn’t easy when the people putting it together suffer from lack of energy and their own personal lists of symptoms they deal with. A great deal of praise and thanks to the project organizer Stina B. who diligently through her own struggles made this happen.
Now we need you! Without backers this still will not come into fruition.
All art and word art in this book has been created by Lyme sufferers, and proceeds go toward helping those who can’t afford treatment.
We thank you in advance for your support and participation ❣️
💚➡️ Lyme Art Book
This quote struck me today; it is (yet another) brilliant quote from Mark Twain.
God is speaking to me through words from an atheist! He really can use everything and everyone for His purposes.
I struggle greatly with discipline when it comes to my illness; partly due to self control, and partly due to fatigue and malaise that make it hard to organize my supplement protocol and successfully prepare a meal regimen, not cheat on my diet, on top of working….
Yes I have fatigue and fog and physical pain to fall back on as an excuse, but how often do I instead think to fall back on the Holy Spirit?
I am currently just beginning an audio book called Discerning The Voice Of God by Pricilla Shirer (I don’t do so well with actual reading), and at the very beginning she talks about having discipline to spend time with God; Not just 10-30 minutes to carve out to read the Bible or our current study, “putting in our scheduled time”, but actually spending precious time with HIM; speaking, then listening, Opening your heart and mind to Him without bringing our pre-conceived ideas to the table of what we think we want to hear or our expectations.
Even on the hard days when I’m in a haze and not doing well with my pills or my diet, can I even just on a spiritual level deeper than words just lean on Him?
I can’t on my own strength, but I can ask Him for help and keep asking and step out into obedience again, and again, and again until that obedience becomes habit.
I pray that for all of us in our struggles. When all the frivolities that life has to offer are stripped away we become deeper people. This is a blessing that comes along with trials, so I hope we can use this “crutch” to the best of our abilities and then let God do the rest. If we fail (and we will) I also pray we don’t linger there (God doesn’t), I pray we treat every day as a restart, another step, and we keep pressing on.
Deep breath, here we go. This isn’t going to hit everyone the same way. We are as individual in how and what we communicate as our fingerprints, and that carries over into our perceptions of how and what others communicate as well.
Now I will start by saying this is not going to be a broad-spectrum discussion on various topics, because (obviously) there are things we should be private about (problems in a relationship with a partner, keeping a confidence, etc) but I will focus only on sharing/not sharing/over sharing as it relates to health and illness.
There is such a whirlwind of differing opinions when it comes to how open we (for purposes of this post I am referring to chronic illness sufferers) are with our struggles and symptoms and the emotional states we find ourselves in because of said struggles.
See prior posts: Judgment & Scrutiny Living With Chronic Illness
The foundation for me as to why, is at its most basic stated in this quote and these verses:
“God never intended that we should suffer alone, that we should suffer for nothing. “~Joni Eareckson Tada
“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ. But if we are afflicted, it is for your comfort and salvation; or if we are comforted, it is for your comfort, which is effective in the patient enduring of the same sufferings which we also suffer;”
2 Corinthians 1:3-6
We are given many examples in the Bible how we are to bare each other’s burdens, share in each other’s suffering, comfort and come alongside those who are sick, hurting, broken….
When did it become an “unchristian” thing to be honest about what you are going through? Or when did it start meaning you lacked faith if you were suffering? If that is true let’s start scrutinizing and judging King David, the Apostle Saul, and well just about every writer and prophet in the Bible! (To say nothing of the entire New Testament!).
What if Joni had never shared her story? Never written? Was never honest about her suffering, but instead had just put on a brave face? I can guarantee she would not have a ministry, not have touched millions, and worst of all not fulfilled God’s calling on her life and His plan and purpose in her trials.
Have you ever read a biography about someone overcoming great difficulty? Were you inspired how they suffered and what they went through and yet kept going?
What about how much you were inspired by a person’s biography where everything went great their whole lives; lots of money, great health, everything went right in their lives….won every race and accomplished every goal? Yeah. Me either.
No not everyone is called to share their dark moments of the soul, or all the ways their bodies betray them on a daily basis, and that’s ok. But don’t judge the ones who are. The ones who share with purpose…to try and get help. To try and help others. To spread awareness. To invoke change.
True you may be “too close” to the person who has suddenly become a verbal geyser of health talk to see clearly why they do what they do; because you know who they were before, and make your own judgments as to their motives.
And I don’t know the truth in every situation, because there certainly are attention seekers out there… What I do know is that the vocal ones are changing the world one person and one community at a time. I thank God for the ones who have, and still help me, who post and blog and share. I learn from them. I am encouraged by them. I love forward in my own journey because of them.
And I also thank God that I have also been able to help others.
None of which would have been possible had we stayed silent.
I am far from perfect, I have over the years been confronted with a lot of my own ugliness; both what has sprung forth from a sick brain, and what is just apart of my fallen self that has needed weeding. That said, I would like to think that with Christ’s help I am here for the right reasons, I refuse to waste my suffering, and I will not stop being open and raw and real as long as God has me in that place, no matter what stage I’m at. And if I’m healed I will not forget or close the door to those who come behind me, who need to read a blog about how they are not alone and that others have walked the path before them.
GONNA’ MAKE IT
“God sees not as man sees, for man looks at the outward appearance, but the LORD looks at the heart.”
1 Samuel 16:7
“Do not store up for yourselves treasures on earth, where rust destroys and where thieves break in and steal. But store up for yourselves treasures in heaven, where thieves do not break in or steal;”
Matthew 6:19-20 (abridged)
Make the goal.
Make the deadline.
Accomplish the task.
Make enough money.
Be a success.
Attain the stuff.
Endure/put up with/get through The trial or difficulty simply with the goal of having it be over so you can get back to doing all of the above.
In our humanity and our society we are very much goal oriented as far as how we consider success. But we are also very much that way when it comes to trials or difficulties; just get to the end and have it be over with! We see the entire “goal” of difficulty to have it be over.
This seems to be very much magnified in our modern Western society where we are driven by comfort, accomplishment, acknowledgement and success. These things are the alter at which we worship and pay tribute to with our very lives.
How opposite we are of God in our viewpoint due to our finiteness.
Because you see God is all about the process. Backwards thinking huh? Or as one of my best friends would say “upside down Kingdom”.
EVERYTHING IS BACKWARDS
…we will stand amazed to see the topside of the tapestry and how God beautifully embroidered each circumstance into a pattern for our good and His glory.
Joni Eareckson Tada (quadriplegic for 50 years)
Anyone who has seen the hugely popular Stranger Things understands the concept of the “upside down”. A world in perfect mirror of ours only it is dark, decaying and full of monsters.
Of course in this Sci-Fi series the “good” world is our own natural one.
But in reality (not tv) we exist in the fallen world where there is death, evil, disasters and pain. It is hard to imagine the perfect Eden God created and what this world was meant to be. But having an awareness that Christ’s death ripped the veil and brought about the Kingdom age of the earth (the indwelling of the Holy Spirit and direct access to heaven in prayer) can change our perspectives of being in defeat, to coming into awareness that victory has already been won.
The enemy’s number one goal at its heart is really about destroying our victory and awareness of who we are in Him.
Ahhh but spiritual warfare is a lengthy topic for another day….. (But hold onto that knowledge!).
Are you downtrodden and disappointed right now? In deep suffering and trial? Is it bringing you poverty, loneliness, oppression, discrimination? Are you low on wealth, love, employment, friends, family, health and comfort?
Those are all super important and the basics in life, and yet they are still things and count as treasures on earth.
No, it doesn’t seem fair and before you think I pass judgment, I am also poor and suffering in many of those same things and have been for years.
“Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.”
2 Corinthians 4:16-18
ACCEPTING WHAT IS UNACCEPTABLE
“For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus.”
Once we have an understanding and acceptance and even appreciation of God’s process (especially when it comes to our own situation) this doesn’t always mean that our attitudes or emotions at every given moment reflect this understanding.
It took many years but I did finally come to not regretting years of illness and the loss of so much life to something that was out of my control.
I came to appreciate all that God had done in me and through me and continues to do. That said, in the years since that understanding I have not always been happy about it, or always appreciated or not reverted to regret.
I have to admit right now being in the season where negativity has been over- running any kind of positivity and I really don’t like myself very much right now.
I have experienced the ebbs and flows that go on in my body, my mind, my emotions and my spirit for so many years that I feel like I can never find level footing as far as where I am in my life, or my spirituality or my own personality. This can be incredibly frustrating especially when I am very much aware of it and how it is affecting myself and others.
As is usual during the more negative times I am quite aware that there is very much a physical component to my outlook comprised of how my internal organs are functioning, my hormones, my toxicity levels and many other factors. But that does not mean I am not responsible to take control to the best of my ability my relationship with God in these times and with others.
Whether I feel like it or not it is in these times that I should all the more dig my feet in as hard as I can into Jesus and into the Word to counterbalance the chaos and negativity inside my mind my body.
What happens when I act out of obedience and do just that? What you’re reading right now is a fruit of what happens. God opens up a channel and I’m able to do the best I can with his help to write for him.
SEEING INSTEAD OF LOOKING
We know that as long as we have breath in life that God is not finished with us. When he is “done” (for reasons that are wrapped in the mystery of his will), we go home. So while we have life whether we be in the midst of trials and difficulties or if we are blessed enough to have things easy; we should never stop seeking, growing, learning, exploring all the things that God has for us in our hearts and souls.
Because that’s why we are here right now, for those things in ourselves and in others.
We’ve Got stuff to do. And if we don’t know what that stuff is right now, at least we know Who to go to to ask.
Knowing God is the beginning of knowing His will and getting to understand what He is up to. Because when we are going through horrible trials we lose our comforts and the very things that (we think) bring us stability (such as money, a steady job, a loving relationship or our health). When we lose our foundations our world is rocked and we have nothing to stand on.
But I think that is the point. When we lose our false foundations we truly do know where we are spiritually, how much faith is real and how much we do or don’t trust God. That is why we are told to consider it all joy when we have trials, because we know we have God’s loving attention and He is looking to building the gold inside us by removing the costume jewelry we have surrounded ourselves with.
“You can never learn that Christ is all you need, until Christ is all you have.”
~Corie Ten Boom
If you have not read Corie Ten Boom’s story I highly recommend it. She survived a German concentration camp and witnessed the murder of her family as well as countless others.
“”Behold, I have refined you, but not as silver; I have tested you in the furnace of affliction.”
We will all go through trials and difficulties. It’s not a maybe it’s a sure thing. The difference is how we choose to face them and Who we choose to face them with and what we allow Him to do in the midst.
One thing that is assured in Christ is that (hear this!) it’s not for nothing and it’s not pointless!!! Quite the opposite. Rather instead we have blessings that would have been unattainable otherwise. I don’t know about you but if I’m going to suffer I sure want to be looking for the treasure and not miss out. It doesn’t mean it’s easy, but it means I will continue to ebb and flow in this journey of life and go through the cycles of negativity only to bob my head free again and recognize the truths God keeps reminding me of and giving me a better understanding of as I work at running the race.
I write a lot about the emotional and social aspects of having a chronic disease and the frustrations that come with it.
I know a BIGGIE with the chronically ill is the feeling of isolation and not being able to participate in normal activities, or at least not as many. Now before I continue there is a great spanse in the Lyme world from bed-ridden and unable to go out at all, to “functioning Lymie” who can maybe hold a job and get by but has limited energy for anything else.
I fall into the second category (I have lived through the first), where I can be social but it has to be carefully planned and very dependent on how I’m feeling and whether I’m working (same day as work usually doesn’t happen).
Oh and did I mention mornings? Lymies know about the morning toxic hangover and how hard it is to get moving in the AM. Which is why church is hard, Saturday morning breakfast get togethers or morning bible studies are out.
That said, I find I’m in a season of life where I (mostly) have to chase and pursue friends to get together. You see if I don’t attend the functions where everyone congregates and makes those “dates” together outside of said function, I’m kind of left having to be the electric communication stalker.
Now I’m not saying people don’t care, or that I don’t have some amazing friends that keep in good touch and are very caring, but there are also some who never make contact on their own, or maybe they say “yes we should get together” and then leave it hanging and never let me know what works for them.
In the age of instant communication when everyone is always on their phones, how did it get to be so hard to communicate and get people to respond? Is it the whole country or is it worse in overpopulated/hyper-busy/rush rush rush areas like Western WA where I live? I mean come on; traffic alone here could keep people wanting to hide in their homes with the blinds closed and huddled in a corner. Driving 10 miles to meet a friend here could mean 40 minutes in traffic and taking your life in your own hands.
Anway, life just seems to get more challenging with every pasing year, healthy or unhealthy.
Those are my musings for today.
(*disclaimer at the bottom of article)
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.
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. 💚