Holy…uh, macaroni? Poptarts–I have depression and PTSD as well, went to a Christian university, and ended up cutting and suicidal way too many times, largely because of the stuff that was done/spoken. Of course, the stuff that I did to make sure I stayed alive wasn’t okay, because staff thought it was inconvenient. Yeah, giving potentially harmful stuff to a friend and asking for her to give me medication bottles twice a day was really inconvenient! ASking her to hold onto it for a month until I could get my antidepressant and anxiety med straightened out was a huge catastrophe. It’s largely thanks to that loving bunch that I left feeling more worthless than ever. It was a terrific place to begin healing from all the child abuse…except for the fact that they just reinforced? all the crap I learned while I was growing up. I also have seven other medical conditions, including fibromyalgia, so it’s not like that stuff helps? I have pretty much left the church as well, and I have no real interest in getting involved in the church scene again. A few weeks ago, a Christian came to my house, saw my room, and after I said apologetically, “I know, it’s a disaster; I’m working on organiuzing it” she said in a disgusted, disapproving tone, “Yeah, it really is. Do you want help?” No, critical lady, get out of my house before I throw spoons at you! I’ll ask for help from someone who understands the fifty different struggles on any given day and, even if he/she agrees, he/she will at least have enough respect to keep his/her mouth shut! Another marched in a week after I moved into this place and said, “I thought this place would be clean and unpacked.” Really? That’s my best friend’s husband? Where did she find that insensitive jerk? Um no, it’s just me who’s handling this stuff, and three months later, I still don’t have everything unpacked–the things I don’t really need are still in boxes. *disgusted sigh, horrified gasp!* Many people are amazed at how I operate since I’m blind. Thanks for the compliments?…but living with seven other spoonie illness is seventy-five times harder, got it? I haven’t left my faith; I have just lost faith in the whole organized religion thing. Again, rant over–it just helps to be able to vent to people who understand. Thanks for taking the time and expending the spoons to listen.

I’ve suffered from migraines for ten years. People tell me all the time that “this worked for this person with headaches.” After ten years don’t they think I’ve tried everything I could have possibly tried to fix them? The worst is when I have to be treated in an ER or urgent care and the doctor has absolutely no sympathy. One doc told me “Have you tried taking an Advil?” OMG NO! I’ve never tried that before ever and it could be the cure to all my problems! “Maybe your stress causes them?” Stress certainly doesn’t help, but that’s something that aggravates the situation, not the cause. I know the cause, we just can’t find a way to stop it. Or rather, we found the way to stop the migraines only my insurance company won’t approve the permanent version of the trial they DID approve.

Too tired to do anymore, stumbling to the bathroom and not quite making it, no longer being able to even walk half a city block, having to drag myself up a few stairs, not being able to stand long enough to cook a simple meal but I look so great. Dressed perfectly, perfect makeup and hair as if I’d just walked out of a salon.
Oh yes, I know all about positive thinking, change the I can’ts to I cans…blah,blah,blah…have heard it from all sorts of well intentioned types.
I also heard from my GP that ‘s a typical post-menopausal problem when I told her about my bladder control problems. This was 1 1/2 years after I asked her if I had MS and she looked me in the eye and said, No you don’t. I guess I just didn’t look sick enough to qualify for MS in her books..
And now 3 years later I have an official diagnosis of SPMS. Wow I guess my diagnosis was right – maybe I should have been a doctor.
And when I finally got my diagnosis, the neuro tells me that he’d suspected MS 2 years ago when he saw me first & I could still walk w/o a cane and and that he should have ordered a brain scan. And on the cervical MRI he thought maybe he had seen a lesion but wasn’t sure. So what was I, chopped liver to be left in the cooler by these jerks till I rotted? I was hung iut ti dry by them and I’m mad because whike I was waiting for an answer I got horibble depressed and just gave up trying, gave up exercising becoming weaker and weaker till I am where I am today struggling to restore some of my mucle mass to be able to walk a bit more.
And he didn’t think to investigate anymore?
No he just waited till I had the good fortune to fall seriously numerous times, to see my ankle swell up and turn purple, be unable to walk without dragging my left foot and unable to stand because of the spasticity in my legs.
And then I’m given the offer of seeing a psychiatrist because at the MS clinic because my responses to a questionaire indicate that I’m depressed. D’ya think? Yes I’m depressed but I know why this time; unlike in past when I had no idea why I was feeling like I did and I took the pills that just added more fog to what was already my MS fog.
Now I know why and I can work on it with my husband helping me the best he can, although at times he just diesn’t know what to do for me – not that I blame him because I so often don’t know what to do either.

Hi I like being called Jenn instead of Jennifer! I have been officially diagnosed with Relapsing Remitting Multiple Sclerosis since 2007. Even my close family members don’t understand that each day is different with MS. You need to read the spoon theory and plug in MS instead of Lupus. My own family isn’t supportive or some of the friends in the neighborhood either. If I am not feeling that I want to get dresses because of pins under my skin like static electricity in my muscles that seems to spaz worse when wearing tight clothes, or I am having hot flashes and don’t feel steady enough to want to take a walk or drive? Does this make me LAZY? I have been knocked over by a horse so scary that I won’t walk out to heard in the back pasture to feed them anymore? So that makes me LAZY? I feel unsteady doing stairs and carrying a laundry basket most days Or vacuming just heats me into fatigue and I need to lay down and nap! ??? I sometimes forget what I was doing or needed to do that I cry! I am now collecting disability but they think the things I need to keep doing for them are so automatic; like I should be sewing buttons when it’s such a mess trying to hang shirts and fold clothes and carry things up an down stairs. When I have an accident or fall down the stairs NOBODY GETS IT and they neglect to be there for me, until they show up and want dinner at 8 or 9 PM. I pay the bills ! ??? But nothing is automatic< I have to set notes ut for myself and I still try to make extra money once in a while and I have to push myself through ALOT to do it but I(we) need the money! I am proud when I can….but tend to be so depressed when I can't. So why am I always the one at fault because I don't try hard enough?? Thanks for the input, I'll tell my Doc when the cane isn't good enough and I need that terrifying wheelchair….

I feel for all of you, and understand how difficult it is to cope with just normal activities of daily living. As a mother of a young child and also coping with severe asthma, fibromyalgia, lupus, GERD, and primary immunodeficiency, life can be very challenging. I am thankful for the friends and family I have that don’t judge and don’t offer trite much-repeated suggestions of holistic medicine or prayer (I’ve done and do both on a regular basis). I appreciate more than I can say just the company of someone willing to give of him or herself and just be present and visit over a cup of tea or coffee. The truth is, that’s more comforting and beneficial to me than giving me flowers, a book, a movie, or basically any “tangible” gift. If asked, I’ll always request that someone stop by for just a few minutes when I’m under the weather (and desire the company of others). So for those of you asking what you can do for a friend or family member who has a chronic illness, my suggestion would be to ask. No one should fault you for caring enough to find out what it is that they want or need.

I hope you come back to see if someone has found” the letter” to Normals,. I read your post and knew instantly what you were talking about, and said “I know how it is to try and remember things haha. As I have the “dreaded disease that sucks the very life out of you also, along with other numerous diseases and syndromes. I found this site by accident looking for the other site that has the letter, ironic huh?Any time you feel up to chatting , feel free to write me. I dont know if I can give my email here so just want to let you know someone is here and actually reads our outpourings of feelings. Take care and God bless you!

I have endometriosis.
The line I hate hearing is “Why don’t you get pregnant? Having a baby will cure you”
Okay first of all, I’m single. I’m single because sex hurts so much that I refuse to have an intimate relationship with anyone. Guess what? Men don’t like that very much! Also, I’m not about to search for randoms to hump without a rubber because someone seems to think having a baby is a “cure” for a disease that has been proven to have no cure.
Secondly, the infertility rate among endometriosis patients is really freakin high. Not to mention I’ve been taking medications to stop my periods for the past few months, and my doctor wants me on them until further notice. Sorry folks, this uterus is closed for business.
I also have a very irregular cycle. I’ve never had a regular cycle in my life that was not drug-induced.
And thirdly, my current living situation does not permit me to have a baby. I live with 4 other people. There is no room, and I’m sure they wouldn’t appreciate me coming home saying “so I went to the sperm bank today and got a surprise for you all!!”

I have friends with endometriosis trying their hardest to get pregnant right now. Telling someone with infertility problems to “go have a baby and be cured” is a slap in the face.

I have a coworker who often says to me, “Push through the pain!” & “God is able!” Some days are harder than others to ignore her.

I’ve read many of your responses, and although each person is unique, and as someone living with fibromyalgia/chronic pain syndrom, I too am one of those who can write my own saga.

First of all, I am a Lutheran Pastor. I had to give up a parish ministry because I could not give them the attention and time they deserved. But my training and instincts are still intact.

My first response is that, thank God, not all religious people are judgmental, or think we are somehow think if you just pray harder, read your bible more, etc. you’d get better. Some of us know better, and some of us, because of our clergy connections are spreading the understanding of chronic disability. Compassionate people, when given information, can put it to good use.

For those who have told you that you don’t measure up as a Christian, my reply is thank God we don’t HAVE to “measure up” to something. The real gospel, for me, is knowledge that my God comes down to my level and is with me, without judgment, but with compassion. If I need to spend it in my chair, or I can be more active, it is ok. If I just can’t do anything, that’s ok, too. There is no “standard” I have to meet, no prayers, services, or anything else I need to do. God loves me just the way I am. I point out that that famous and favorite verse, John 3:16 “for God so loved the world that he sent his only Son…”if you note, God loved the world BEFORE he sent his Son…he doesn’t just love a perfect, sinless world…he loved it just the way it is: with our messiness, our failures, our exhaustion, our regrets, etc.

(end of sermon…)

I too take lots of meds; thank God for the medical insurance I have that covers my meds, my dr visits, etc. As far as I’m concerned, I understand the difference between addiction and tolerance for a drug. I really don’t care that I have a high tolerance for pain meds. If it lets me function as well as I possibly can, that’s ok. I am not trying to get high, I’m trying to live the best quality of life I can and be of as much service as I can. These drugs, the fruit of medical research, let me do that. So, I don’t care what “society” thinks.

(end of sermon)

I would just encourage those out here in this situation to be patient with ourselves. That’s the first step toward coping.

Pr Chris

I’m 58, and have had severe asthma most of my life. I developed diabetes at 41 (probably due to years and years of heavy steroids to control the asthma). My lungs are permanently damaged, I have fibromyalgia, severe acid reflux, and more problems I won’t elaborate on. And my former insurance company had the gall to write my doctor and say I was on too much medication. So what should I stop taking? Yes, it’s cheaper to let me die, it won’t cut into your profits. I had a woman at a former job harangue me about not having enough faith or I’d be cured, and then get on the phone with her young son who was home with a cold, so she could coo to him “did you take your medicine, honey?” Oh, she’s not going to tell him to get rid of it with faith? Give me a break. Without the faith I have, and the reliance on God, I would have laid down and died a very long time ago. And I’m SO tired of the “you don’t look sick” line, so I stopped wearing makeup. Let the world SEE I feel lousy, and get off my back.

I am sad that so many of my fellow spoonies have been harrassed or abused by a gospel that isn’t accurate. I am surely not telling anyone what to do, but one thing that has helped me tremendously in coping with people who bring up the have enough faith and you will be healed crud, is to read the Bible for myself. I am a Christian and do have faith in God. Faith in God however, is totally different than faith in healing. I have faith that God has a plan and will prevail in the end in all of His goodness and lovingkindness toward me, but don’t know what will be healed in this life or in the next. From a Biblical perspective, God looks at the eternal, not the temporary and so what seems terrible, all the trials and tribulations of this life, are for a short time. I think people sometimes don’t understand why God healed some people in the Bible. Here is a hint, it isn’t because He is an all powerful ATM
machine or candy store! The have enough faith and you shall be healed crowd gets the relationship reversed. They think we tell Him what to do and He does our bidding. Sorta odd to me, but I have had to put up with some of the same as you all have. I by the grace of God though, have not judged Him based on what other people do or say about faith and healing, and I am so glad, because He has gotten me through so many things! And to the one who was abused as a youngster, I am so sorry and sad that that happened to you! That is the fault of the sinful cruel evil people who did that to you though, not God’s fault, Horrible stuff like that though is why God hates sin, because sin really hurts people and Him because He does care.
I look at this world as a testing ground and a refining fire. I can either let my wounds bleed bitterness or compassion. I prefer to allow the sorrow suffering and difficulty that I go through give me compassion for others who are suffering. I am not saying this is easy and as a matter of fact, I don’t think that I personally could do it if it were not for God.
Please do not think I am trying to preach or to judge anyone who thinks differently than me. I just wanted you all to know and feel freed by the fact that the Bible does not say you lack faith or have done anything specifically wrong such as not having enough faith to cause your sickness.
I run into that attitude all the time, but it simply is not what the Bible says.
As a matter of fact, next time someone says that, ask them if they have read the book of Job or why Jesus had to suffer and even die? Does that mean Jesus didn’t have enough faith? I think not! Even Jesus cried out “My God, My God, why have you forsaken me!” What anguish, and yet we somehow have to be different than that when we suffer? Jesus had fiath obviously, but my point is that suffering happens in real life to real people and if everyone dies, that means that no one has enough faith if you take their shoddy theology to its logical conclusion.

I read the first one and knew I was going to like this top 10. I was diagnosed with RRMS 4 years ago, and it is an everyday battle. I have tried every drug, every holistic method everything. I hate the saying, but you look fine, well guess what I’m not. I take meds for everything, nerve pain, muscle spasms, to wake up, etc. I am in pain 24 hours a day. People do not understand how exhausting it is to be in pain. If you don’t have a chronic illness, you don’t understand.

I have NMO, for some of you who are still searching for a diagnosis, look it up. It’s rare and took four years before I got a doctor to diagnose me. Most drs. don’t know what it is. But I know what it is and that’s what is important. It helps me to understand the illness and what is happening in my body. Is it scary? Yes Is it depressing? Yes Am I in pain? Yes Am I constantly dizzy and struggling with a lot of issues that I can’t control? Yes Am I still alive? Yes And today, I can still walk and see the sunshine so I will take what I have and make the most of it.

Each of us has a choice, accept it and make the most of it and wallow in self pity. Oh I have a big ol’ pity party for myself now and then and I cry now and then. But I am determined to move on. I want to enjoy what I can in whatever way that I can.

As for faith, I have total faith in God. I know that he did not “do” this to me. I know that he is here with me. Sometimes our help from God comes from the people that he sends our way, such as the right doctors, people who can support you and help you. Sometimes you have to keep looking before you find the right ones. Don’t give up hope, because hope is what keeps you looking.

LMAO on number 8!! That had me laughing for a good 5 minutes, hehe! My husband failed to see the humor in it… but since he doesn’t have any illness – invisible or otherwise – I don’t expect him to “get it” on stuff that comes down to anything medically associated.

He means well, and loves me, but a LOT of the medical stuff goes right over his head – sometimes including jokes!

Thanks for sharing your top 10 list – it made my morning a little bit brighter.

A fun one I actually got from a psychiatrist I was assigned a few months back, regarding my Bipolar I w/Psychosis: “When you are down, think happy thoughts and you will feel better”.

I put in for and started seeing a different doc right away.

I am 46, Hodgkins Disease survivor, have Lupus and fibromyalgia, neck/back problems, Raynaud’s Phenomenon and Reactive Arthritis- for 1+ years and still work full time, sitting at a desk and typing all day-when possible. In order to do this, I have to take a handful of pills in the morning and take meds for pain and Lupus all day long. I hear that my diet is bad (too exhausted to cook after working all day) Oh you are so thin, I wish I was like you (lost 15+ lbs since the Lupus diagnosed, dont think you would want to give up going in the sun and sitting on heating pad all day) and that I should stop the pain meds (me -??? don’t know if I could still move- Oh, you don’t know unless you try it). I will take the prayers and blank looks, but I guess it is just when you know that no one wants to hear how bad you hurt and sometimes you just have to talk about it that really hurts. I do have YOUNGER friends/co workers with MS and Rheumatoid Arthritis, I just tell them I love them every time I see them-because I know a little about what they endure every day raising a family. I think everyone just needs to lend an ear and listen.

I have a number of chronic illnesses that lumped together have significantly reduced the number of spoons. There are days when I have a full complement of spoons and days when I only have one or 2. I get tired of people telling me “there is a new medication” because IF there is a new medication, chances are that I already know about it because I am obsessed with feeling better.

I think one of the writers brought up a valid point in that people really don’t know what to say. Even if someone asked me what can I do to make you feel better I’m not sure I could come up with a good answer.

I am allergic to ever “good” pain med under the sun, and get sick of people thinking taking these meds (if I even could) in an attempt to become comfortably numb when the goal is just to have enough functionality to be able to get through the day.

I am sick and tired of being sick and tired. I think the toll that chronic pain takes on your being can be very depressing when you allow yourself to think about what your life is going to look like long term. I try to take one day at a time, I try my best to have a good attitude and to enjoy each day as it comes.

I resent being on a restrictive diet, I resent not having the energy to do the things that I used to do with so little effort. I think anger is a big factor in all of this.

While I don’t think holistic healing is the complete answer to our ailments, I certainly do think it can play an important role in our wellness along with Western medicine.

As far as not having enough faith, that God wouldn’t give these issues to us if we couldn’t handle it and the I’ll pray for you crowd: the words are so incredibly hollow to me, they carry no meaning. Do I believe in God? You bet I do. Do I believe that God would overburden me or punish me for not having enough faith? No. Not part of my equation. I think everyone has to find their own path to coping. In a way I find that talking about chronic pain is very taboo because so many of us do take highly addictive medicine to cope and have a life. Many people respond negatively when you explain to them you are take particular meds to be able to have a life. While there certainly is a stigma associated with mental illness, I think there is a huge stigma associated with the treatment of pain as well. Perhaps if we as a group became more vocal about getting adequate pain relief, we would make some progress, but that would mean giving up some critical spoons…..

I love it when friends and colleagues tell me the MS Symptoms I experience on a daily basis are either related to my middle age and more importantly “we all struggle with those sort of things”.

Get a long term helth condition girls and enjoy the battle for the basics of life, HEAVY DUTY INCONTINENCE PADS, CATHETERS, STAY AWAKE DRUGS, GO TO SLEPP DRUGS, MULTIPLE PAIN KILLERS, BUTT PLUGS, BLADDER BOTOX, I could go on but the girls out there think that this is just part of normal life GRRRRRRRR

I love this saying if God brought you to it he will get you through it ! I love this saying also If you are willing to do the ridiculous than God will meet you to do the miraculous! It’s my motto I stay positive listen to K-love radio station surround myself with positive people and have good words come out of my mouth your body hears everything. Stress does nothing good for the immune system ever and encouragement through the storm helps! There is a beautiful song by lori story I believe her name is What if our greatest disapointments are His Mercy in disguise. She wrote the song about her husband that has been cured from a brain Tumor. I continue to have a mystery illness that causes me to lose balance. Neg for lupus thank god! Please keep me in your prayers as I will for all of you.
grace

Note about Religion –

Someone told me I needed to “get religion” for my problems. I am not opposed to people being religious, but she had absolutely no idea that you can’t just go to Stop N Shop and pick up some religion.

For some of us it is a slow process of leaving a religion that doesn’t work for us; then it is a slow process of finding some form of spirituality that does work for us. A thoughtful person who is having serious problems can’t just pick up religion like a rock.

I’m not going to comment on the “struck by lightning” people who suddenly have an epiphany and get religion, other than to say good for them.

I here you on this on. I have ra and things can be tough as anyone with an auto immune diease knows. I was off work for sometime because of a flare. When I came back to work someone asked what was going on. I explained that I have ra and was having a touch time. She looked at me and said maybe a bowel cleanse would help. Really really drinking something to make me poop. I never thought of that wow, I just need to poop more. I looked at her with a straight face and said my meds make me sick I get the diaharrea, so I am pretty cleaned out most days. Then she said maybe you should not take those pills if they make you sick. Thanks I will consider that.

i have a problem with people telling me “i saw in this one article or i heard (insert source) that if you”. Unsolicited advice is about as bad as bad advice. I don’t need someone to tell me what to do to “fix me” that is what my doctor is for. i have FIBRO and it isn’t going to magically go away. i am on a variety of medications to help combat it but even those only lessen the intensity of the pain. it hurts and hurts bad. one woman asked what can she do? be supportive and understanding without giving advice. keep praying for those of us that battle this demon daily even for those who don’t seem “appreciative”. but please know this is NOT going to go away but good days can be had every once is a great while.

I contracted ‘Stills disease’ (Juvenile Rheumatoid Arthritis) when I was seven years old. My mum, who already had one sick child suffering with Asthma, had to wave me off in an ambulance at my first visit to the childrens hospital because back in the 1950’s the authorities were allowed to just take your child away. It had nothing to do with my Mum being neglectful or anything like that, it was just because they didn’t know what was wrong with me so they whisked me away.

She brought me up to be a normal healthy person with an extra added bit to deal with, which she didn’t do with my sick sister, who still reacts differently to me when she doesn’t feel very well, no matter what is wrong…for example, a cold. I was in hospital a lot between the ages of 7 to 13. Then they decided to stop hospitalising me and give me the treatment in the out patience department.

When my knees were so swollen that I couldn’t bend them they chose to disperse the fluid by using a syringe, drawing it out. It was agony. One day I went to my GP because my knees were too swollen for me to cope with, I saw a locum. She decided to drain the fluid there and then. Giving me an anaesthetic in my knees first….something the other doctors had never done for me…WHY?

I have arthritis is every joint, oh except for my left hip, thats been replaced…best thing ever. Stress is a major factory in my illness, but that was only something I was able to work out for myself after my children left home and I was able to focus on me. I changed my pace of life and now I am in remission a lot more than I have been all of my life. I was a single mum and felt so bad for both of my children. I didn’t realise how much it would affect them. I didn’t have a very good handle on reality because I was just coping with my pain from one day to the next.

I want leave a message for Linda Perham. It wasn’t until I was living by myself I realised just how much guilt and anger I was living with had had an affect on my body and my children. And if I don’t know that, how can somebody who hasn’t got an illness understand and know. With my particular pain I just explain it feels like toothache throughout my body. Because I really had no idea how to cope with my illness, then how can anyone else. I love the spoon theory and have passed it forward to so many people now. So thank you so much for taking the time do write it and share it.

And Linda you’re right…what else can you say to people who have an illness to live with, at least you care enough to try to help.

I think this was rather unkind to those of us who want to help, but do not know what to say. I have many friends with chronic health problems, and I feel helpless because I don’t have an answer to their pain.

I get sick of saying , “I’ll pray for you.”, even tho I do pray fervently for them. It sounds “lame” to someone who does not trust in prayer. And to the the person who wrote about the church people saying he did not have enough faith, I apologize on behalf of the Christians who know what the Bible really says about prayer, faith and healing, Hundreds of people have needlessly turned their backs on church just like you. Please find a church that preaches the truth and compassion of the Bible. We’re out there!

Listen, guys, your ARE loved, and we DO want to be helpful. It’s just that some times we just don’t know HOW to help or what to SAY. Please show us the way instead of just tolerating our suggestions.
God Bless You, Linda

I have bipolar disorder type 2 and PTSD, which means that I pretty much always feel depressed and crappy. Like that Cymbalta commercial says, “Depression hurts.” There’s nothing to take for it, it just hurts. I’m the medication compliance poster child so I have more good days than bad now, but even on my good days, I tend to feel very fragile and emotionally brittle.

I grew up Christian and went to a Christian university, and walked away from the church as an adult, because I got tired of hearing “If you’d just have more FAITH, God would heal you.”

How much faith is that, exactly? Can you give me a goal amount to work towards? It hurt, so bad, because I wanted so desperately to BE healed, but it wasn’t going to happen. Medication and copious amounts of therapy have healed me as best as I can be healed. Being anointed in oil and shamed for not having enough faith only made it worse, because instead of wonky brain chemistry being the reason, *I* was the reason. I had failed somehow, and that didn’t do much to help my depression.