I talk with a lot of desperately ill people. They tell me their stories. And I’m angry. I’m really angry.
Precious people with the most severe cases of poorly understood chronic illnesses are treated like trash. I’m fed up with it. Why is it that those who have been dealt the most suffering on this planet are the ones with the least support? I’m sick of hearing stories of heartless and arrogant doctors, cruel and dismissive spouses, friends who label them as crazy and leave them all alone at their most vulnerable.
People are facing eviction and homelessness because they are too ill to provide for themselves and even social services is doing nothing. People are starving (yes, literally) because they are too ill to feed themselves and there is NOBODY there. Doctors would rather lock people up in psych wards than admit they might not know everything there is to know. This cannot be real. Is the world really this cruel?
Yes. Yes it is.
Does anyone know what sacrificial love is?! I’ll tell you what it’s not. It’s not showing up only when it’s convenient. It’s not helping only those who can return the favor. It’s not labeling someone as a “hypochondriac” so you can excuse yourself and stop caring when they cry for help.
Let me tell you something…
Suppose they are crazy? Suppose they are hypochondriacs? Why would that absolve you of the responsibility to help a fellow human being God has placed in your life? If they were hypochondriacs, they’d probably need your help even more — because I cannot even begin to imagine trauma that could motivate someone to fake something like this. It would have to be something so extremely bizarre and indescribably awful it would warrant all the more tenderness and grace.
But really… who would fake this? Why would anyone want the stigma that comes with chronic illness? Why on earth would anyone pretend to have an illness that gets them nothing but disrespect, skepticism, unkindness, ridicule, and accusations? How could anyone believe these people are doing all this just to “get attention?”
I was accused of this by a neurologist just a few months into my five years of chronic illness. “You spend a lot of time taking care of other people,” he told me. “Maybe you just want people to take care of you for a change.”
Let me set the record straight. I didn’t want attention. I didn’t want my brand new husband to have to take care of me. And I can think of a hundred other painless ways to get attention a lot faster and more easily. Things that don’t involve any number of horrible limitations like being confined to bed, eating a depressingly restrictive diet, being stuck in a wheelchair, missing out on social events or being isolated in a dark and quiet room. Things that don’t require painful procedures, expensive surgeries, loud MRI machines, midnight ER visits, IVs and blood draws.
How about singing at the top of your lungs at the shopping mall? How about driving an ostentatious vehicle? How about making up a story about meeting a famous person? How about taking your pet snake with you everywhere you go? How about running down the street naked? If you want attention, there are easier ways to get it.
If a few days off work, some coddling and a bowl of soup is what you’re after, a fake flu will do just fine. There’s no reason to put yourself through hell and arbitrarily suspend your productivity for years to come. Don’t you know that it’s human to want to be productive? To have deep relationships? To engage in society? To contribute something meaningful to the world?
Nobody wants to languish in bed. Nobody wants to withdraw permanently. Nobody wants to be a burden to everyone around them. Nobody wants to be alone and dying.
I’m sick of hearing about doctors who would rather blame physical symptoms on psychological problems than do the hard work of getting to the bottom of someone’s illness. I’m sick of hearing about doctors who flat out deny a patient’s symptoms and think that “faking for attention” is an acceptable diagnosis.
Do doctors think they are so important and wonderful that all these emotionally disturbed people are desperate for their attention? What?! That is the height of arrogance!
What are you offering that you think we want so badly? I have news for you: going to the doctor is generally unpleasant, even for healthy people. It’s not somewhere people go for comfort. Do you think we get the warm fuzzies when you ask us to step on the scale, listen to our hearts and squeeze the blood pressure cuff ever tighter? Do you think we feel special when you ask us to describe the consistency of our bowel movements and the color of our vomit?
Do you want to know why chronic illness sufferers start sounding crazy after a while? They’re in excruciating bodily pain, their head is pounding, their brain is foggy, their vision is blurry, they haven’t had a good night’s sleep in weeks, their skin is itchy all over, they’re starving and nauseated at the same time, they’re having seizures and heart palpitations, they’re passing out and losing consciousness. They are isolated and rarely have the energy for human connection. They are alone and scared. They are SUFFERING and they are DESPERATE to make it stop. Sometimes that motivates them to try things that don’t sound very plausible to you. It probably didn’t sound very plausible to them either.
They are vulnerable. Everyone and their mom is trying to sell them some magical multi-level marketing product or one-of-a-kind supplement. The doctors who don’t dismiss them are making false promises, draining their finances dry, and eventually giving up on their case. They are exhausted and they just want the pain to stop. Do you know how hard it is to think about anything else when your body is constantly screaming at you?
If someone close to you suffers from chronic health issues, I’m asking you to stop and imagine something: What if they aren’t exaggerating their symptoms? What if it’s actually only ⅓ of what they are going through because the rest is too complicated or awkward to explain? What if YOUR body was doing this? How would you want to be treated?
Please understand, I’m not saying it’s your responsibility to fix their situation or cure their illness. I’m not saying their explanation for why they are sick is 100% accurate or the treatments they talk about are 100% legitimate. But can you at least acknowledge their illness is real (and it’s not just in their heads)? Can you ask them how to help and follow through?
I want to close with two quotes from Proverbs that have been running through my head:
Do not withhold good from those to whom it is due, when it is in your power to do it. Do not say to your neighbor, “Go, and come back, and tomorrow I will give it,” when you have it with you. (Proverbs 3:27-28)
He who shuts his ear to the cry of the poor, will also cry himself and not be answered. (Proverbs 21:13)
No, we are not responsible to help everyone. It’s not always within our power to do it. But too many people are shutting their ears to that one person they do have the power to help. Too many people are saying “go and come back tomorrow” when they have resources to help right now. Too many people are shirking the responsibility they do have towards those who are ill within their own families and faith communities.
This is not okay. This is why I’m angry.
Your vulnerability is so gut wrenching and much needed. Thank you for it. In my own process of recovering from Lyme, I too am learning that anger has it’s place, and it’s okay to feel it. For me, anger is usually the secondary emotion, masking fear or pain that I haven’t dealt with yet. But denying the anger (my habitual response) just masks the real problem. I’m still in the process of learning healthy ways to express anger and ask myself what the root is. I sure don’t have all the answers, but I trust that He does! It’s trusting, and letting Jesus bear my burdens that is hard 🙂
Anyhow, thanks again for what you shared and know that I am praying for you and Brett!
CorettaOctober 30, 2019 at 5:01 pm
Thank you, Coretta. I hope it does some good. I can see how anger could mask fear and pain at times. Especially when it’s anger against circumstances that are outside of our control.
In this case, I think it was just pure anger against the ways vulnerable people are being mistreated. I think anger against injustice and evil can be healthy and good if it energizes and motivates positive action . There’s a lot to be angry about in this world. I think God is angry about it too.October 30, 2019 at 7:46 pm
Hi Ana. I never thought about that before: “I think maybe God is angry about it too. ” (to paraphrase). : ) KaylaJuly 23, 2020 at 10:35 pm
Hi Coretta,November 3, 2019 at 1:22 am
Where are you from? I would be pleased to get in touch with you. I think I might have Lyme deseise even if the test came back negative (Canada). I’m trying the AIP to get rid of the symptoms (pain, painful boils). It would be nice to exchange with you and know a little bit more about your journey. Hope to ear from you! God blessed!
Thank you for your very articulate exposure of a huge problem in our nation. I know it grieves the heart of God that we are not ready to “weep with those who weep” and to treat those who are suffering with respect. Praying that you message touches many…both those who are suffering and those who can make a difference in their lives. Blessings to you and Brett.October 30, 2019 at 7:55 pm
Thank you so much Edith!November 2, 2019 at 6:43 pm
Ana, I’m so sorry that this has been the experience of you & of so many. I know I am blessed because I have been treated very well over all by medical staff & by those around me. Yes, there have been lots who have dismissed too soon or only looked on the surface, but so many have been so incredible & gone above & beyond. People can be cruel, and life can be so helpless, but we serve a good God who can put the right people in our path.October 30, 2019 at 8:10 pm
I pray He does that for you & for all of us in this community. I also pray for the medical staff. It’s got to be a horrible job. I can’t imagine working where no one saw me under calm circumstances & so much was on my shoulders in half hour brackets day after day. I’m not making excuses for them because that is by far not my place. But I pray for them too. Maybe they need it most of all.
I love you so dearly & endlessly.
I’m proud of you for letting yourself feel your emotions.
You are amazing!
Thanks so much, Whitney! I love you a lot.November 2, 2019 at 6:44 pm
And then you’re left on the street severely ill because the toxic mold in your home had been killing you. You’ve been housebound and bedbound for over 7 years and spent all your savings trying to get a diagnosis. You literally flee your death bed and don’t even look like yourself anymore and nor can you even speak anymore. Yet people still don’t believe you or turn a blind eye. You almost freeze to death on the streets. Your former friends and family show little if any concern and you spend day after day screaming for help as you are completely debilitated with pain, brain fog and damage, etc. You can’t find a safe place to live, nor can you afford one even if you did. You left everything you ever owned behind with the hope that after 7 years you barely remember, you might have a chance at life again. Everything that everyone else including my former self takes for granted. All you want is some help and support. For people whom you thought were your people to rally around you and help you figure this out because your brain is not working properly and there really seems no way out. You feel more and more hopeless and isolated and alone and soon, the thoughts of there can only be one solution left to stop this start entering your mind. You tell a certain select few people that in the hopes that they can do something or say something to offer you any hope. But they don’t and soon enough they are gone again. You were once someone everyone loved and wanted around. Now. You’re homeless, cold, hungry and very sick. No friends, no spouse, no family, no money to help you turn things around. And you know knew if you had just one of those things, you could do what you know you need to do to heal and get back to some kind of normal life. Which is all you want, think, eat and dream about. But day after day passes and it never comes. No hope. Holidays and birthdays pass. You now spend them alone wondering where all the years of spending them with family and having that you and happiness have gone. You’re terrified. You watch your friends who are in the same boat that you are start committing suicide. At first you don’t want to believe they will actually follow through, but then they do and you completely understand why. When you know old you would never entertain such a though not matter what petty problems used to pop in your life that now seem so silly and insignificant compared to this. People tell you to “just got to a homeless shelter” not realizing the levels of toxicity there would kill someone without a functioning immune system. Or the endless suggestions that are not realistic or helpful but make the other person feel better because they feel like they are at least doing something or saying something. Then , they go on with their happy little lives. Their homes, families, careers. Everything you would give your right arm to have back. And try doing any kind of avoidance of what you need to avoid to heal without someone by your side helping you. Or money. When you wish more than anything you would have gotten an accurate diagnosis from years worth of incompetent doctors whontook your money, gave no answers and left you to die penniless on the street. After working so hard for so long, having nice things. A social life. Plans for the future of marriage and babies. All gone. No help for anyone in this position and seems like there never will be.
Thanks for letting me vent.
Heartbroken.October 30, 2019 at 8:47 pm
I’m so sorry, Beatrix. I’m so sorry. It’s a cruel world.November 2, 2019 at 6:49 pm
I feel the same way as you do, its devastating. And with no money for treatment i remain hopelessly sick 🙁 I hope you have found some relief?February 18, 2020 at 1:09 pm
Wow. You nailed it. All of it. While reading I realized the dr’s appt I made for next week is worthless. That’s why I make appointments and cancel the day before. I’m notorious for this because I know they can’t help me. There’s no where to go or to turn. Doctors and some family just don’t care. This is why people die alone. There’s no solution and we’re stuck in the system. The relief comes reading what you wrote because it tells me I’m not the Lone Ranger even though it feels like it.October 31, 2019 at 6:39 am
You’re definitely not alone. There are too many stories like this. I’m so sorry, Chris.November 2, 2019 at 6:51 pm
I can definitely relate to everything you wrote.
I think your anger is a sort of “righteous” anger… I can be among other believers at this time. However, I have not shared my chronic illness challenges with them. Out of fear of being misunderstood and not taken seriously. Validation from people has been a thing for me for a very long time (thank God He is breaking that off of me).
Complex chronic illnesses appear to me to have a lot of parallels to Leprosy (in the way the community is treated at-large… isolation… the stigma).
We too often put our faith and trust in “men”. We ought to turn to Jesus in our suffering (He knows suffering to the utmost and He came so that we might have life and more abundantly).
As believers, we have hope in our salvation and eternal life with God. Let us cling to that…and be of good cheer… knowing that Jesus Christ has overcome the world.October 31, 2019 at 9:17 am
Thank you for sharing these great thoughts Brittany. You are definitely right that our ultimate hope is in Christ. I believe he is grieved and angered by the ways those who are suffering are being mistreated and ignored.November 2, 2019 at 6:57 pm
Ana,October 31, 2019 at 10:54 am
Thank you for expressing beautifully what is my story but I am too exhausted and too brain fogged to write myself. This could have been written for me or for so many other sufferers I know.
The world seems so cruel. 15 years of chronic illness for me, family, friends doctors dismissed me. Only my son and a few fb friends understand and even then noone really understands someone’s individual pain, what is inside their head. Their loss, time, social, financial, material. What it is like to lose everything and still only get worse while your family and friends and doctors dismiss you. Label you as psychosomatic. Useless doctor appointments, even the ones that are supposed to be experts take all of your money and when you fail their protocol, they drop you.
We are all are unique. But I also believe those with chronic illness are the same in that we all are the same in that we desperately want to get better.
I’m so sorry, Charleah. It is all to common. My heart goes out to you.November 2, 2019 at 7:02 pm
Ana, thank you so much for writing this. I’m having an extremely hard time right now — all of the emotional and physical complications of being chronically ill for 13 of my 23 years are catching up to me. All the invalidation and humiliation and ignoring, and all the isolation, for all those years, and just being plain exhausted from the pain, and from fighting my body to survive, constantly. Thank you for putting into words what I haven’t been able to express. I think I’m going to try to share this with my family. They are well meaning and really care (and my mom has asked me to forgive her for how she treated me growing up, sick) but no matter how I try to say it, they don’t understand why I feel so alone, or why I need the support of people that get it. My mom feels hurt that I think “strangers” could know/understand me better than she does… I don’t know what to do. I feel like I’m drowning. But your post was so wonderful to read.October 31, 2019 at 7:34 pm
I’m so sorry Keleigha. That is a long time to suffer the pain of illness with all the invalidation and humiliation on top. I’m sorry. I pray there will be healing in your relationships and that gracious and kind people will be able to look at you and believe you. It’s so important to feel seen.November 2, 2019 at 7:20 pm
Dear Ana,November 1, 2019 at 3:26 am
This is painful to read but sadly too true. I have had CFS/ME, FM & POTS for four years, illnesses that are known for their stigma and loads of misunderstanding. Mine was so severe and debilitating that it kept me bed and wheelchair bound for over two of those years. If it wasn’t for Jesus and for my family caring for me I don’t know what I’d have done. Though my experience may not be as desperate as many others, I can relate to much of what you shared. I agree, no one who is experiencing the agony of chronic illness would fake it. It’s just too awful.
What do you believe is needed to help these people? In your opinion, what steps can we take to reach out, understand and love them?
Thanks for sharing your story Caitlin. I’m so sorry you can relate all too well. I too have been blessed with more support and help than many have.
In terms of what’s needed, I guess I think empathy is the first requirement. If people can’t believe and imagine what it would be like to be in someone else’s shoes then they’ll never be able to offer support that truly helps. I think there’s a lot of practical help that should be offered too and it’s such a shame how badly churches seem to be failing at this.November 2, 2019 at 7:26 pm
Well said. Thank you!November 1, 2019 at 6:12 am
I have several friends with similar circumstances. I feel sad for them and wish that I could make their pain and fatigue go away but I can’t. So often, chronic illness that isn’t visible to the naked eye gets dismissed by others as a mental health problem and brushed off. I know that my friend’s pain & fatigue are REAL. I hope someday that there is a cure for this. Meanwhile, I just listen to them trying to be as supportive as I can.November 2, 2019 at 12:57 pm
Thank you so much Suzanne for being a good friend that listens and believes. That alone is more than many are willing to do. Thank you for caring and for seeking ways to support your friend. 🙂November 2, 2019 at 7:27 pm
I’m in tears, Ana, and shaking. It is so terrible, and I pray to God that He will send relief and hope to those who so desperately need it. I pray to God that He will awaken His people to the desperate needs around them and give them hearts of compassion like Jesus, that they will be willing to be uncomfortable and just BE with people who are suffering, even when they don’t have answers. God bless you again and again, sister.November 3, 2019 at 4:54 am
Thank you so very much, Rebecca. This is exactly what is needed and it is my prayer too.November 3, 2019 at 10:51 am
Amen, sister.November 4, 2019 at 4:34 pm
I am really thankful for this post. As some one who does not have an illness like that it really puts it in perspective! Thank for you writing this!November 4, 2019 at 9:07 am
Thank you for reading Juliet! It means a lot.December 8, 2019 at 5:40 pm
I SAY HELLO WITH HUGS OF UNDERSTANDING, KNOWING THAT THE MODERN TERM IS KNOWN AS “TOXIC PEOPLE” WE ALL KNOW (JOB) HAD THEM IN HIS DAY, THERE ARE TOXIC PEOPLE WHO LIVE TODAY JUST LIKE IN THE TIME ELEMENT OF JOB… WHERE THEY ASK HOW ARE YOU DOING, ANYTHING I CAN PRAY FOR ETC… YET WHEN YOU HUMBLY TRY TO ALLOW YOURSELF TO POUR OUT A LITTLE OF WHAT’S GOING ON IN YOUR LIFE AT ALL LEVELS… RATHER THEN GET SOME EMPATHY/UNDERSTANDING FROM THAT INDIVIDUAL/S YOU GET REPLIES LIKE… ARE YOU SURE YOU’RE NOT ALLOWING YOUR BRAIN TO SEND YOU FALSE ECHO’S OF PAIN, YOU KNOW THE BRAIN CAN DO THAT!” OR THEY LIKE TO REPLY “IT SOUNDS LIKE YOU HAVE SIN IN YOUR LIFE!” THEN WHEN YOU REPLY IN FRUSTRATION… YOU’RE TOLD IT SOUNDS LIKE YOU HAVE ANGER IN YOU!” YOU WEREN’T ANGRY BEFORE THE START OF THE CONVERSATION, YET THEIR BEING “BUTT’S” PUSHES YOU TO YOUR BREAKING POINT, THEN YOU BECOME THE ACCUSED! IV’E LEARNED THROUGH MY SUFFERING OF 8 YEARS NOW, NOT EVERYONE IS YOUR TRUE FRIEND, NOR YOUR CHEER LEADER!! THEY CAN WRITE YOU OFF ALLOT EASIER WITH ASSUMPTIONS THEY MAKE AGAINST YOU TO APPEASE THEMSELVES !! THEY PROVE TO NOT BE A FRIEND THAT LOVES AT ALL TIMES, THEY ARE THE ONES WHO CLOSE THEIR HEART AGAINST YOU, SO DOES THE TRUE LOVE OF GOD NOT ABIDE IN THEM? THEY BECOME THE ONES WHO WILL SAY… “LORD WHEN DID WE SEE YOU…?” PROVERBS 14;7 SAYS… STAY AWAY FROM FOOLS, FOR YOU WILL NOT FIND KNOWLEDGE ON THEIR LIPS!”November 7, 2019 at 12:47 am
THE RESCUE VERSE ARRIVES IN PSALM 34;18 “THE LORD IS CLOSE TO THE BROKEN HEARTED, HE SAVES THOSE WHO ARE CRUSHED IN SPIRIT!” WHAT SOME PEOPLE WHETHER INSIDE OR OUTSIDE THE CHURCH DO NOT UNDERSTAND, IS THAT THERE ARE THOSE WHO LOVE GOD WITH EVERYTHING INSIDE OF THEM, YET THEY SUFFER AFFLICTIONS OF EVERY KIND!! WHAT CAN AMAZE A NON BELIEVER IS, HOW CAN SOMEONE SUFFERING EVEN SMILE? BUT SADLY IN THOSE WHO TEND TO JUDGE AN AFFLICTION, THEY ARE THE ONES WHO HATE YOU, I KNOW HATE IS A STRONG WORD, YET IT IS TRUE WITH SOME. THEN THEY WILL SPEAK OF YOU IN ANGER, OR ACCUSE YOU BEFORE OTHERS SAYING IT IS YOUR OWN FAULT, YOU ARE THE WAY YOU ARE BECAUSE YOU HAVE CHOSEN TO LIVE THIS WAY!! I ONCE ATTENDED A FAITH HEALING SERVICE AT THE REQUEST OF A FRIEND, I WON’T MENTION THE NAME OF THE SO CALLED HEALING EVANGELIST CONDUCTING THE SERVICE… I SAW AN ELDERLY MAN WALK UP TO THE PLATFORM WITH A CANE ON EACH HAND, HE ASKED TO BE HEALED SO TO NOT HAVE TO HOBBLE WITH 2 CANES, THE EVANGELIST PRAYED FOR HIM, THEN MOVED ON DOWN THE LINE… SO THE ELDERLY MAN STILL STANDING WITH HIS 2 CANES WAS STILL ON THE PLATFORM, SO THE EVANGELIST SAID “ARE YOU STILL HERE WITH YOUR 2 CANES, I ALREADY PRAYED FOR YOU, YOUR STILL USING THOSE CANES, THEN THE EVANGELIST KICKED BOTH CANES OUT FROM UNDER THE ELDERLY MAN, HE FELL TO THE FLOOR, THEN THE EVANGELIST SAID WITH AN ARROGANT VOICE “IT’S YOUR OWN FAULT!!” I BELIEVE NOT EVERYONE IS TO BE FREED FROM BEDS, CRUTCHES, CANES, WHEEL CHAIRS, AFFLICTIONS, BECAUSE IF WE WERE ALL HEALED, THEN WE WOULD NOT BE ABLE TO REFLECT THE GLORY OF GOD IN OUR OWN WAY THROUGH OUR OWN PERSEVERANCE BY STILL LOVING A PERFECT ALMIGHTY GOD! REMEMBER WHEN THE DISCIPLES OF JESUS ASKED HIM WHO WAS RESPONSIBLE FOR SINNING IN THE FAMILY OF THE MAN BORN BLIND? WAS IT HIS PARENTS, OE EVEN THE BLIND MAN HIMSELF… JESUS DIRECTED THEM FROM CAUSE TO PURPOSE BY SAYING… ” THIS HAPPENED SO THAT THE WORD OF GOD MIGHT BE DISPLAYED IN HIS LIFE! JESUS BASICALLY SAID, WHY ARE YOU LOOKING FOR SOMEONE TO BLAME? JUST LIKE THE EVANGELIST I WITNESSED BLAME THE MAN FOR STILL BEING AFFLICTED IN AN ELDERLY STATE OF BEING. MEPHIBOSHETH WAS DROPPED AS A BABY, THEREFORE HIS LEGS WERE MOST LIKELY BROKEN IN SEVERAL PLACES, AS THE BONES MENDED, THEY WERE NOT SET BACK IN THE DAYS OF DAVID, SO THROUGH HIS ENTIRE LIFE HE COULD NOT WALK, YET HE WAS INVITED INTO THE KINGS PALACE, GIVEN HIS OWN QUARTERS, SERVANTS, EVEN A SEAT AT THE KINGS TABLE, SO THIS LIFE IS TEMPORAL, LIFE IN THE KINGDOM OF GOD IS ETERNAL, LET US GLORIFY GOD IN ALL FORMS OF AFFLICTION, BLESS HIS NAME WITH OUR LIPS THAT IT CAUSES OTHERS TO SEE HIS GLORY!! ANA, I KNOW THE LORD HAS MADE YOU STRONGER EVEN THROUGH THEE MOST HARDEST TEETH GRITTING MOMENTS IN YOUR LIFE!! YOU ARE A WARRIOR IN MY EYES & HEART ANA, I KNOW THAT NEITHER DEATH, NOR LIFE, NOR ANGELS, NOR DEMONS, NEITHER THE PRESENT NOR THE FUTURE, NOR PRINCIPALITIES NOR ANY OTHER POWERS CAN SEPARATE YOU FROM THE LOVE OF ALMIGHTY GOD!! I KNOW THERE IS A LIGHT INSIDE OF YOU, THAT WHEN THINGS LOOK DIM, IT STILL SHINES, ANA!! YOU ARE SUCH AN INSPIRATION, EXPECT GREAT THINGS TO STILL ARRIVE FOR BOTH YOU & BRETT!! THERE IS AN OLD SAYING… GOD IS ABOUT TO DO!!! GET READY!! YOU & BRETT & THE PUPPY ARE LOVED!!
Thank you so much for this comment John. I know you understand precisely what I’m talking about. You had some good words to share here. I’m deeply sorry for what you have endured and yet so grateful for the faith that is so evident in you. I can not believe the blatant cruelty of that supposed “healer”! What a world we live in. I am so thankful we can entrust ourselves to a God who judges justly.December 8, 2019 at 5:39 pm
This is horrible… all of it. I don’t know what to say, except that you are right. All my friends have said the same thing about going to the doctor and being told they just need to relax and realize how wonderful they are. It’s maddening. I just wish the suffering would stop. ALL of it.November 12, 2019 at 1:22 pm
I’m right there with you. I wish it would all stop. One day it will. Hang in there. ❤️December 8, 2019 at 5:41 pm
Thank you for being transparent and speaking out for all of us who are going through similar circumstances! I’m a young wife and mother of two young boys and have had a chronic illness for going on six years. Almost all of the doctors I’ve gone to have made me feel like a hypochondriac seeking attention or have dished out a diagnosis that in my gut I don’t believe because the symptoms don’t match up with the diagnosis. I’ve been labeled by some doctors as “A doctor’s worse nightmare” because all of my tests come back clean and point to nothing abnormal, yet I live daily with debilitating illness. I know I must have some kind of autoimmune disease and suspect one in particular but all tests come back negative for anything at this point. You’re very right about how people will either write you off as attention seeking and roll their eyes when someone else mentions your problems (I try to talk as little as possible about my condition with others), or if they ask how I am doing, they are extremely uncomfortable when I simply say its a rough day and I leave it at that. One person asked me one time, “How are you doing?” I said, “Oh, I’ve had a bit of a rough day today but thank you for asking.” They said with a smile, “Oh good, good!” then walked off and left me wondering what just happened?! I’m a firm believer in being honest but sometimes it hurts less emotionally to just say, “I’m fine.” because I know that if I’m honest it just makes everyone including myself, uncomfortable. Anyway, I apologize I’m not trying to write a book here! I just wanted to say thank you for putting this issue out there and voicing what many others agonize over silently. I hope you, yourself find healing and good health in the near future! God bless and thanks again!November 26, 2019 at 7:09 am
Thank you for taking the time to share your story, Kara. I’m so sorry to hear of the suffering you are enduring. Chronic illness can really complicate relationships. I’m so sorry. I understand the awkwardness you referenced here. I hope you find answers soon and that the people who are truly on your team will make themselves evident. ❤️December 8, 2019 at 5:44 pm
Anna,December 22, 2019 at 10:29 am
This post brought me to my knees. Our son in law has been suffering for almost 9 years. Of course it has meant that our daughter is suffering also in lots of ways. We as their parents are thankful for Gods faithfulness to them and their determination to walk by faith and not by sight. But,as you’ve so aptly said in this article ,all of it is horribly painful. The sorrow , the constant sense of loss that has become our new normal. We feel such a sense of helplessness most of the time. Could you give me your best thoughts on how we can love, support, and bless them, even from a distance. They live a thousand miles from us, but we want to support them as much as we can, any thoughts would be appreciated