The helpful advice of others, or what they presume to be helpful advice…don’t we just love it? It’s always interesting to have people who have absolutely no clue as to what we go through everyday try and tell us WHY we we are sick, WHAT caused us to be sick, and the REASON we are sick is because we have NEGATIVE thoughts.
How many studies, news articles, blog posts, reports, etc. have to be done on ME/CFS, Fibromyalgia and other invisible illnesses before people get it that WE ARE SICK – PHYSICALLY SICK. WE ARE NOT MENTAL CASES!
I had a smack down from my hubby this week because he heard John Tesh say on his radio show that people with chronic illnesses are sick and don’t recover because they are generally negative people and don’t think positive thoughts about themselves or life in general. I was furious.
I do believe that having a positive attitude can affect one’s health, but it is not the end all, be all determinant of such. It’s when people get on their soapboxes, like John Tesh, and then my husband with me, and basically saying that we are MAKING ourselves sick, I just want to throw something.
I tried to explain to my husband that the negativity vs. being sick is kind of like the same theory as the depression theory we always heard with our illnesses. People with chronic illnesses are always told that they are sick because they are depressed first. But we have explained to our doctors and anyone who will listen that the sickness came first, then the depression. It is the same with the negativity. When I am feeling well, I don’t have the negative thoughts. I am like a completely different woman. It’s when the long flares kick in, the overwhelming pain sets in, that the negativity starts to breed. And I work on that – every single day.
But you can’t expect someone to be running through the fields like Julie Andrews singing and twirling when in the misery we are in. Sorry – but it’s just not going to happen. If it brings you down, then you shouldn’t have signed up for it is all I can say. The only thing I can do is try my best every single day to be a better person and I am constantly trying to work on myself.
Chronic illness is just that. It is CHRONIC. It is not going away and negative thoughts, positive thoughts, whatever we do is not going to make it go away. Period.
First of all I am ashamed of John Tesh for ever making such a comment. When you say ‘all’ your statement is automatically invalidated because it cannot be true. Not all people who are ill are negative. Period.
Now that I got that out of the way. I just don’t get this trend that is happening where if you are sick your are less. In the head, the body, in determination, in whatever.
I challenge anyone not sick with this illness to live with it for a few years in the severe form. I gaurantee a few minds will be changed! Ugh.
I agree with you as well that postiveness does help. However, as I discovered this week, when I am in an energy crisis (my new term for the that dirty word – ‘fatigue’) it affects my ability to think properly. I finally had to give up and give in. Plugged in my New Testament CDs and just let that soak into my brain while my body was fighting this ME relapse.
What I find ironic is that if you suffer a brain injury from a car accident and have behvorial changes or mood changes, it is not seen as a mind over matter thing. It is seen as a physical trauma that affects how you respond mentally and emotionally.
Yet, that logic doesn’t seem to transfer to ME. Hmmmm…
Happy April Fool’s Day. 🙂
Sandy, I’m so glad you published this. This is what I’ve dealt with in trying to make my husband understand about chronic illness. The other day, he went on a tirade, and told me it was all in my head and my entire family had the same problems. He was spouting off because he doesn’t know what to do either and wants to blame it on something else. My Mom has had nerve problems all her life but this has nothing to do with nerve problems. She had anxiety and panic attacks which I have never had. Even though I don’t think he believed what he was saying, it is still very hurtful. You feel like you are alone in the world an desperately trying to get someone to see the truth.
I’m very surprised at John Tesh. He is a Christian man who should know better than to make a statement like that. But it just shows how much a lot of people know about chronic illness. They want to tell us what’s wrong with us when they don’t have a clue. I have never wished anything bad on anyone, but in order for some people to wise up, they need to experience what we go through for just a few days. I think we’d have a lot more folks on our side after going through that.
And John Tesh is going to hear a thing or two from me if I get a chance to address this in a comment on his website.
Danease
Hi Sandy,
I completely understand your frustration because I’m met with the same attitude sometimes. Generally, I am a positive person. It’s like you said, however, it’s hard to be positive when the pain it beating you down everyday. The negativity isn’t causing my pain though. My pain, like yours, is causing my negativity. I believe in the power of positivity and I’m exploring various techniques to help me cope. It’s just really difficult to “get there” on those bad days, which are more often than not. And, It doesn’t help when celebrities or other people make judgements when they have absolutely no clue what it’s like to live in constant pain or feel like the life-force is being sucked out of you.
All the best,
Britta
John Tesh really sucks anyway.
Thank you so much for your article. I so appreciate knowing I am not alone in this department! I have had doctors say similar ridiculous things to me, if not worse. It’s hard to keep going when people insist on continually bringing you down. Stay strong! All of us dealing with invisible illness understand & support you. 🙂 Thanks again,
Melissa
It seems most people around me always want to look for a reason my fibro acts up. they think stress seems to be the big thing. of course they can’t believe there isn’t a reason. when my fibro acts up I get lumps on my arms, so now my husband is rubbing my arms to see how bad I am feeling. there have been many times there are no lumps and I feel rotton but now there is nothing physical to prove it.WHY DOES THERE ALWAYS HAVE TO BE A REASON FOR FIBROMYALGIA? IT JUST IS
If positive thinking helped, then I wouldn’t be bed ridden. I’m naturally optimistic, and though I don’t like being ill at all, my mental state is usually good. And yet, I’m still sick! It’s almost as if I had a REAL ILLNESS or something! *shakes head*
The doubt of family members hurts the most. Best wishes to you. 🙁
I’m really surprised at John Tesh. People like the Dictator – excuse me, President Obama – think they can tell us all what size we should all be (anorexic) and what we should eat, incl. how much – wave a magic wand, and make all the sick people healthy. Nonsense! That is why we were made all different shapes and sizes!
I have one autoimmune disease (the body attacks itself instead of healing) and am currently being tested for Celiac Disease, also autoimmune. I think for a long time some of my relatives thought, “She’s not sick, she’s just lazy. She’s making up anything to get out of working.” Well, my mother-in-law has come around, since she’s seen me go downhill over the years. Now she runs around opening doors for me or finding me the most comfortable recliner to rest in. She had a knee replacement and now she understands what pain is, so she feels empathy for me. Also, her daughter is similarly disabled.
When people say I look fine, I say, “Okay, come to my house anytime and witness how much I hurt and struggle to do things over a 24-hour period.” They don’t hear me yell with pain while I’m trying to shower. They don’t see me struggle to get clothing on. They didn’t experience my having “acid diarrhea” last week, which feels exactly how it sounds, so they didn’t hear me screaming from the pain. They don’t see me “lock up” if I’ve been in a sitting position too long. If that happens, my knees won’t unbend and I literally cannot walk. I try to swing my legs from my hips, and I can’t even do that. I’m quite literally rooted to the spot until I unfreeze. They don’t witness my “fibrofog”, which as far as I can tell is exactly like my dad’s expressive aphasia since he’s had a stroke. Also like Dad, most times I have trouble solving problems (keeping financial records) & have to ask my husband to do it. My mind just can’t handle it anymore.
I tell people, “On TV it looks like Lyrica ‘cures’ fibromyalgia, but it doesn’t. It just helps a little.” We are really, really, really sick! That, Mr. Tesh, is what you need to tell the public!
My mother and I had an arguement last week that I dwell on my illness. That I’m always on the computer looking at Fibromyalgia. When I told her, I want to find answers to my illness, I want to find out what other people have tried that helps a certain symptom of fibro, or maybe I can be helpful to someone else who is suffering. She replied, “I don’t think there are any answers.” Now I almost feel like my family’s eyes roll up when the fibro word comes out of my mouth as if to say, ‘OK Amy, what’s bugging you today.”
People don’t understand that not only do we as fibro sufferers deal with the torturing aches and pains in our muscles, we deal with insomnia, migraines, difficulty concentrating, restless leg syndrome, IBS, and many other symtoms that can correlate with the fibro.
Dwelling on it, yeah it is hard not to dwell on something that makes you ache to the very core of your being and then put on a happy face. I had a doctor tell me once that fibro was worse than cancer, because with cancer you either die or recover. Fibro sufferers just continue to suffer day in and day out.
I agree totally with the depression coming after the chronic pain. I never ever, before I became a chronic pain sufferer, ever thought I would go through the hell of depression and anxiety.
Melissa Callis, you took the words right out of my mouth. I just wanted to start crying when I read what you wrote. Im crying now. It just feels like no one gets it. Things are so hard for me right now that i litrally just want to give up and die.
I have stayed so positive these past 40 yrs that only a minute few even know that i am sick. It took me over 30 yrs to be diagnosized. It gave me a sense of relief, but i am still dealing w/it all w/o proper meds.
In 1996 my husband started falling apart first his knees and back then he began having heart attacks 4 so far, then came the diabetic stroke. He has to take a suitcase full of meds each day just to get by. I was hurt at work when I was 26 I’m now 59.I also have a whole list of other physical problems. Next is our daughter who is 34 now, she had two traumatic brain injuries one when she was 19 the other when she was 22 along with other physical problems. I didn’t know my medical family history until I was 32 as I was adopted, My birth mom had an autoimmune disorder and even though we couldn’t inherit it directly we do not have good immune systems. Is it depressing? Yes! When a doc asks me if I’m depressed sometimes I just laugh. Would I have chosen this for us? No way!! People that are healthy do not understand illness, especially to this degree.Sad for them!We have to be our own advocate, for us and others,if people don’t listen to us find someone they will listen to.If they don’t listen then there is only so much we can do.
I was always the optomistic one, actually couldn’t stand to be around negative people. Always the life of the party and love to see others happy. And now I have become a different person because of my fibro, it’s really taken a toll on my body and mind. My best friend told me the other day to snap out of it! That really hurt. Why can’t they see that I don’t want to feel this way, that I am miserable and miss my old life. Don’t they see that if I could just snap my fingers and this would all be over with I would’ve done it a long time ago! Some people really are so clueless and unsympathetic!
I am with you! I battled this for a long time. People accused me of negativity at times when in reality it was sickness. Staying upbeat when you are sick is difficult to say the least. I was diagnosed with Chronic Fatigue Syndrome, Fibro, MS, Parkinson’s and a few other things and suffered for years. As it turns out, I didn’t have any of those things. We found out that my heater was leaking trace amounts of Carbon Monoxide and that’s what was making me sick. It’s called Chronic Carbon Monoxide Poisoning. Technically not enough to kill you, but enough to make you really sick! Since I discovered this I have been sharing my story and have freed two other people that I know of from this prison. If you have anything in your house that runs on gas you should get this checked. Most carbon monoxide detectors don’t work. I had three of them in my house that failed me. Call the gas company. Have them come out and do a test in your home.
I was in a good mood for the first five months of my illnes. I hadn’t gotten my CFS diagnosis yet. I was in the denial/barganing phase: you know; if I just eat right and rest up this will all go away. I had the positive attitude. What happened? Hubby and I had a huge fight, I pushed myself too hard and I got worse. Bedridden worse. Then when this all sunk in and I was denied disability I got depressed. If positive thoughts would make me well then I should have been cured last year.
So what gives John Tesh the right to make a comment like that!
I have always had a sunny disposition, ever since I was a child. Even as I coped with major depression through my teen years and early adulthood, I was still a naturally optimistic person, overall.
Today, I’m 26. I have been effectively housebound all winter by exhaustion and pain; I’m not working, although I’m trying to launch my business right now. Since I’ve been doing more, I have been having more fatigue, reaching lows I had not even imagined. I am frequently too tired to use the computer, to read, it feels like just breathing is an exertion. Forget about the effort it takes to go to the bathroom! I have not been discontented, even in the midst of my struggles, because I try to focus on just being where I am and not comparing myself to others or to my previous self. I celebrate my little successes. Now, though… I need to be building, I need to be living, I need to be places that are just not possible for me. I have been incredibly fortunate that I haven’t had to work and that I have a husband who is happy to be married to me and provide the support I need. But looking into the future, I see endless days where the high point is sitting by the window, listening to the birds sing and hearing my windchimes. That’s the high point, and the low points are very low. I wonder sometimes how I’ll find the energy to parent, how I will share all the good love and knowledge I have inside myself, how I’ll be able to support my husband as he starts his career, when I struggle just to put on clothes.
I’m very blessed in many ways. But I am sick, I’m sick and I’m not getting better. People love to give me their thoughts about what I’m doing wrong, but I’m NOT doing ANYTHING wrong. They just want to believe that I am, because it’s so incredibly terrible, what I’m living with.
All I have left is prayer, sometimes. Prayer and meditation are preserving me today; let’s hope they preserve me tomorrow.
Bless you, I love your post, all of it especially though the bit about sitting watching the birds and listening to the wind chimes. That never ceases to amuse and lift me, just watching the birds feed and have a splash in the water.
If people really could experience just for ond day how we have to fight to survive every minute with this disease, they would think twice about what they say. Thay don’t live in our world so they can’t know. But if they care they can educate themselves and then show just a little empathy.
Prayer is my saviour too, I am blessed with great husband and children but in times of severe sickness, which can be every day, its off to the prayer closet I go!
Take good care of yourself.
I was blasted on twitter yesterday by someone who claims he has fibro since he was 17, he had the nerve to tell me I am negative which is not true. I am in a very bad living situation On SSI, and have a few autoimmune diseases plus tumors on parotid and submandibular glands. I blasted him. He kept on tweeting to me and i was on my mobile asking me what he can do to help. I told him honestly that What i need to get out of the abusive situation with mother and older sister is Money. I was not asking him for help at all. Nor would i accept it . So this was in full view of his 18,000 followers. Then he tweeted me from his private account @nottheicon & @UnseeingEyes. I was so humiliated and embarrassed. Then he blocked me etc. He said he works out and can eat nails. B.S. I used to work out in the beginning with fibro and I got worse. I also have sjogrens, CFS, Fibro, Deg Disc Disease have had 4 surgeries just on Jaw, neck & back. Not to mention being on SSI and HMO medicaid and not having enough money for food let alone Having FUN as he said . I am so upset . I told him to go F himself. what b.s. we have to endure. Like i love living likie this. Sleeping on a cot in my mothers tiny bedroom. With them verbally and emotionallya abusing me. No room in the refrigerator for me to even put MY water in let alone any food. Lost 12 lbs & can’t even cook here becuase THEY ARE I have to ask permission to shower. There is only one here. Sorry for venting. Then other things. But oh well. I try very hard. I am alone, no Friends here at all. One but he is very ill as well. Divorced and formerly able to have good health insurance and etc.