Having recently had fresh conversations with others with long-term invisible illness I thought I would post this most excellent article again.What is completely disappointing and devastating beyond just the illness is the hurt you can experience from the friends and family that either don’t care, or treat you as an annoyance, or possibly even think you are lying or just whining. They ignore you, belittle what you are going through, or pretend it doesn’t exist. What is a common experience of those who suffer long-term illness is that people don’t understand why you don’t get better, why this never ends. That’s when the accusations come that you just want attention or its all in your head. I have heard this from literally every single Lyme/invisible illness sufferer I have ever been in contact with.
This is even more devastating because from my personal experience this also comes from the Body of Christ.
(****Before going on I will write a quick disclaimer that I/we do have some wonderful caring Christian friends that DO walk out their faith and are genuine in love and taking action. There ARE amazing Christians and churches out there that are living for Christ).
These are the same Christians who do their daily Bible studies and attend church regularly. They talk about returning to what the church should be, which if you study the early church and what Jesus commanded (and put into practice Himself) it was about coming alongside each other, being “real” in each other’s lives. Coming alongside the hurting, the sick, the destitute… They did not have church programs, festivals, worship bands and entertainment. It was not all about bake sales, the new women’s devotional, “Christian” scrapbooking or just doing the “fun” part of Christianity. It was following Christ, sharing the Gospel, actually loving your neighbor as yourself and living sacrificially.
No they weren’t perfect, the early church was messy. And no there is nothing wrong with programs and fun stuff. But when a church and individuals focus on those things and spend all their money and time on those things and blatantly deny or ignore those in real need, there is something seriously wrong. We have lost our love whether we think we have or not.
It breaks my heart when I hear that my father (who is an attendee of a large church and even a teacher there) reaches out in prayer request saying he can hardly bear what he is going through anymore and receives no response from anyone. that devastates me. Also when mega churches also tell you that they refuse to help your situation because they want to keep a non-profit status, and that its your responsibility to get help from friends, they have just tipped their hand and told the Body that “we are no longer the Body Of Christ, we’re a business”.
That’s it folks, churches are now businesses operating in a corporate world. They don’t necessarily provide support, they don’t necessarily have people even to come alongside and pray and help. We focus on programs and ignore people.
God is not dead but I am afraid a lot of His people may be.
This is something that I have been contemplating for years; the void, the hole in the church, and apparently the church has taught it’s people well because I don’t think a lot of Christians are even aware that just saying a quick “I’ll pray for you”, and then walking away and not giving it a second thought isn’t (or shouldn’t be) normal. At least not normal being in Christ. Churches in persecuted countries are completely different.
Returning to personal experience I am grateful that I have experienced the cold shoulder from some friends and family and the Body; because it has revealed my ministry to me and what I want to do to help others, and what I do now in my limited capacity with fellow Lyme sufferers.
May God someday grant me better abilities and resources to help fill the gap in the church and minister specifically to the sick and suffering, the ones that most people ignore or don’t understand.
Do I fail people? Yes.
Am I perfect? So far from it it sickens me. Have I come off as cold, uncaring, listless, not present, selfish, unsocial…..? All the time! And I feel guilt about it everyday. Not until you experience the personality changes that spirochetes and other bugs can cause would this make sense.
But I also recognize that I get glimpses of who I really am in times I am doing better and I am a better worshipper, better friend and a better support to my fellow I.I. Community. Once and a while a person who is newly suffering from something will tell me how much new appreciation they have for chronic illness. Would that everyone came to that understanding without having to suffer themselves.
Quotes from this article:
“One of the most difficult things about being chronically ill is that nearly everyone finds what you are going through incomprehensible. Healthy people, as you quickly become aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions. Not you. When it is you, in your loneliness, in your forced preoccupation with enduring your new reality, you ache to be understood in a way that you can’t be.”
“Regardless of the duration of your illness, survival depends on learning to build something new from your different reality. If life is a canvas then chronic illness only gives you one color to paint with. ”