OT: A ‘Do-Not’ List for the Chronically Ill & Things NOT to say to us

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I think this is an excellent read for any of us dealing with a chronic illness, be it FMS, MS, CFS, lupus or otherwise.  I can tell you I am really bad about beating up on myself for all my shortcomings, to the point of despair. And I have been there recently.  I don’t wish the illnesses or diseases on you that any of you out there experience, but I am grateful there are people out there who share some of the same interests and passions and who also understand something of my journey and what it’s like to walk in my shoes.  We all look out for one another in our own ways, and we also have to look out after ourselves.

http://www.psychologytoday.com/blog/turning-straw-gold/201308/not-do-list-the-chronically-ill

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Be kind to yourself . . .

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And some things we never want to hear . . .

About fedoralady

I'm an LA native--Lower Alabama, that is. My husband of more than 30 years and I live here on a portion of my family's former farm with two gorgeous calicos and a handsome GSD mix. My background is art education, and over the years I've been a teacher, department store photographer, sales associate and a journalist. My husband, his business partner and I have Pecan Ridge Productions, a video production company, for which I shoot & edit video and stills and manage marketing. I also still write part-time for the local paper. I love movies, music, art, photography and books, and my tastes in all of them are eclectic.

38 responses »

  1. Thanks for this…my mom lives with FMS, hip replacements, degenerative discs, heart stents, diabetes, etc., ad infinitum and it makes me insane for her when people make such stupid, insensitive remarks. Invisible wounds are no less painful.

    • Obscura, your mom and my late MIL had many of the same challenges. Because we both had FMS it seemed to draw us closer together. She put on a good face but she was suffering a lot of the time. People just need to stop and think before they speak. *sigh* I had someone insist to me several years ago when I was slimmer and looked pretty good that there COULDN”T be anything wrong with me. Really?? We just have to keep trying to educate people.

      • If I had a nickel for every time someone said, “You don’t look sick…”, I’d be a rich woman. I’d still have FMS, but I’d be rich.

  2. Don’t you just wish you could slap people sometimes! I’ve learned to turn my grimace into something resembling a smile! Both my girls and I suffer from Celiacs Disease, the amount of time people tell me stop being fussy, or that a little bit won’t hurt! Grrr! My hubby is type 1 diabetic, has been for 37 years! Hate the fact people think he’s going to fall apart any moment! Ok, rant over! Keep spreading the good word honey!

    • Yes, I confess I do. Sometimes I just say bad words in my head and plaster a smile on my face. One thing that having FMS for all these years has taught me is to never judge a book by its cover and never assume you know just what someone else is going through in terms of their health and well being. Don’t be condescending, for goodness sake!! I think I am a lot more compassionate and appreciative when I do have good days or even good hours. We’ve got to try to encourage and lift each other up, you know?

      • This is Dee.

        I do indeed! Just give me a slap if I ever condescend to you! I’ll deserve it! Thank goodness for a sense of humour, if nothing else it makes the things we REALLY think much more interesting!

  3. If I had a pound for every time I heard every one of those comments, I’d be able to pay a person (preferable Guy of Gisborne ;)) to slap the speaker for me!

    Another one I often get is “Oh, I wish I could sit down all day like you.” Funnily enough, whenever someone says that, my evil-minded wheelchair is sooooo tempted to run them over and make them sit on the curb. Bad chair. Muahahaha!

    Although, very often, comments about me are addressed to whoever might be with me (regardless of how well they might know me or not), like the infamous classic: “Does she take sugar?” or, more often in my experience, “So, what’s wrong with her then?” or “Awwww, it’s nice that ‘people like her’ get out sometimes.”

    • OH, Vicki, I know that has to be maddening. And Guy would be GREAT at slapping the crap out of them, too!! 😉 I can imagine you in your Wheelchair of Evil, laughing maniacally as you mow a few of those idiots down. Muhahahahahahahaha

      I am sure there are people who think I am lucky not to have to get up and go to work every day. Oh, yeah, it’s great not having a regular income of my own and no health insurance and no vacations. And due to my health issues, not likely to ever be able to hold down a full-time job again. I’m ecstatic!! *rolls eyes* Oh, I still count my blessings, don’t get me wrong. But I do miss that paycheck, meager as it was . . . and the benefits.

      When I was teaching at the School for the Blind, I would get so aggravated when I was out in public with some of the students and people would talk to them through me or would SHOUT at them. They weren’t deaf, they just didn’t see too well. And they could speak for themselves!!

  4. Thank you for this post, Angie–this is a battle we have all been fighting for so long that there are too many days where it seems endless.. It’s so much easier to be kind and compassionate, and it doesn’t cost you anything but maybe a moment of your time–I wish more people remembered that far more often.

    • Sometimes I have days when I stop and think how many more years of this I will have to likely endure and frankly, it is depressing to say the least. So I have to try to focus on the positive and keeping that sense of humor intact and remembering to “be kinder than necessary as most people are fighting a hard battle.”

      • Aldous Huxley was famously asked his advice to make the world better, and he said, “Be a little kinder.” I try to keep that uppermost in my thoughts, even when I have one of those days when I think I can’t take any more.

  5. I really needed to see this tonight. We play golf on Friday nights and we were almost done. I hit the ball badly and said, “I’m getting tired,” Jon said, ‘”well if you’d get out more, you’ve started to become a real couch potato.” I looked at him and said, “Did you forget the heat and humidity has kept me in the house or was that my other husband?” He looked at me and said, “Oops, sorry.” You know sometimes sorry doesn’t cut the mustard, especially when it’s your husband of 30 years.

    • Awww, yeah, sometimes those nearest and dearest can and do forget. Every time I spend much time outdoors right now I get tired that much faster, my coordination gets worse and the darned insects will NOT leave me alone!! Not to mention getting sweaty and uncomfortable. *hugs*

    • Did you hit him with your golf club?

      I felt like I managed fairly well with the FMS until I hit the big-60–and everything changed. I’m not sure how much of it had to do with the many, many years I had worked multiple jobs with 12-14 hour days (sometimes seven days a week) while acting as primary caregiver to my mother and then my brother . All the while telling myself I couldn’t stop.because there was no one else to do it–but I’ve heard often that if you don’t stop, your body will finally stop you and I think that’s what happened to me. I still struggle with that part of it almost every day. I have to work myself up to doing tasks that once would not have fazed me, but now exhaust me because they take so much longer than I expect them to. This happened just yesterday, and I was wiped out for the rest of the day. But there it is. It is what it is. And it does help to know that I’m not alone.

        • I certainly can’t argue with that–there have been many days that looking at or listening to Richard in any of his incarnations has been the main source of brightening a day where I felt like dirt. That said, I think if people would invest half the time in being kind and considerate of each other that they do in being jerks (especially to people they don’t even know), this planet would be a far better place to live. One of the many things I love about Richard–he not only says it, but seems to truly believe in it.

          • Richard is the sort of guy who puts his money where his mouth is. I think he truly tries to live the life he encourages us to live–being a kind, considerate,generous and forgiving individual.

            • Which is just one of the reasons he deserves every good thing to come his way–universe, are you listening?

  6. Thanks Angie for this post. As a mom of a son with Autism I see where people stick foot in mouth because they don’t think before they speak or just don’t understand to start with. Son3 has had food and clothing issues that people will tell me “oh it’s just his age”, well yes it could be. I have 2 older sons and know that children have phases. The other one is he will never be much, WHAT. How do you know that? He keeps surprising everyone and that is great. He don’t look like he has Autism, but what does it look like. There is so much to learn about Autism, that the Doctors are still learning.

    Sorry to rant, but I so understand. Some of the bad things said have been said by Mr. 70’s family. Even how we had to tell the family is very bitter to me.

    • And you know, in this day and time, I can’t quite forgive some people’s obvious ignorance. There’s this little thing called the internet that most people have access to, and while there’s a lot of bullsh*t there is also some helpful information about various conditions, including autism and Asperger’s Syndrome. Yes, there is also much to be learned, just as there is for FMS, but we are always hoping for breakthroughs and advances, aren’t we? If you aren’t informed enough to make an intelligent comment, have enough common sense to keep your mouth shut rather than possibly hurt someone. I would want to KILL the people who say “he will never be much.” WHO put them here to play god and make such decisions?? My nephew Jeffrey, who was born with a number of physical and mental disabilities, was never supposed to live past his first birthday, let alone make something of his life, but he kept defying expectations. Yes, his poor fragile heart gave out at 22, but he’d gotten his high school diploma, had a part-time job, was active in his church and in the Miracle League. The outpouring of love for that kid was amazing. He touched many, many lives in a positive way. So don’t let anyone tell you such things!! I am certain you clearly know better, anyway. 😀

      By the way, feel free to rant away some more if you wish. It’s completely understandable, my dear.

    • Thanks, Angie, for reminding us not to judge others thoughtlessly or quickly, as many people have handicaps that aren’t visible. Katie70, don’t ever give up on your son who has autism. He can and will continue to surprise you. My younger son has Fragile X Syndrome, my older son Aspergers, and my grandson has autism. My grandson’s progress (diagnosed before 2, now 14) has been miraculous, in my opinion. My son with FXS is now 46. He struggles constantly against unseen handicaps, but with love and kindness, support, adapted teaching and expectations, he has achieved a great deal, considering the unseen difficulties he must deal with constantly.

      And yes, he has been many times hurt by cruel, stupid, thoughtless comments and criticisms from classmates or co-workers who can’t see what he is up against. And I have been, too. I spend oodles of time facilitating him in living the independent life he has achieved. Those who know FXS are astounded when I recount what he has accomplished. Yet it still hurts badly that he has to carry this and neither he nor I will ever be free of it.

      Attitude is extremely important. As Angie says, keep positive, keep things in perspective, and keep laughter as the best medicine!

      Angie, I laugh every day at something of yours! You have such a gift for captionning photos of our beautiful RA, who tells us to be extra kind and extra forgiving, and who himself gives us the example of perseverence when the going gets tough. Now I’m off to son’s house to do more stuff.

      • Today’s sharing is why we never talk bad about someone liking another actor more than RA. Well except that time Lady Oakenshield went nuts over Gerard Butler (Beowulf)..but then that started a whole new life for me.. We all understand that we struggle with something in our lives, me, 4 heart attacks and MS,exacerbated by severe depression (part of MS). I look healthy so why aren’t I out there doing it all…but I read each of our notes and damn if there isn’t someone out there who has it worse than me. So that being said, I love you all, I send positive energy to you all. oh, and I really do look great today….ROTFL–ONICGU–(rolling on the floor laugh–oh no I can’t get up.)

        • Yes, we all have our struggles and challenges and dark times. When it’s not immediately visible to people–not virtually leaping into their faces–often they assume everything is just peachy. So you do the best you can do. You have to be made of good stuff to make it through all that, Arkenstone, and still be with us! I bet you do look great today! 😀 My hair is back to its wavy normalcy, no sleek mane today. Going to leave 4:30 or so for the retirement/birthday celebration we are covering in town. Hope my knee behaves itself. Planning to wear the brace . . .

      • Son3 has made great headway, from the three year old who did not talk to the 6th grader on the B honor roll. He just keeps doing what he needs to do. Our school has been great at helping and it is the whole team. The school is good at making sure that children with disabilities spend time with the other students, there is little teasing and once the school knows puts a stop to it. Since I work at one of the schools I see this, I also enjoy working with all the students even if it is to feed them lunch, they are a joy. Everyday is a new day and everyday gives us something new. Best to have a open minded view on things makes life better.

        I do get put out by people in the public who think they can cure Autism. It is better to accept the person for who they are than trying to change them or thinking you can because you can’t accept them.

        • I think when children are blessed with parents who love them and accept them as they are, whatever their abilities or disabilities, and believe in them, it makes all the difference. And the children in your lunchroom are lucky to have such a caring and kind lady serving them lunch, Katie. 😀

        • even if it is to feed them lunch–I don’t EVER want to see you write this again….if not for you some of those children would go hungry….I being one of them as a child. Lunch ladies are my heroes.

          • Thank you The Arkenstone! We live in such a land rich, but job poor area that we know that some of are students get only what we give them at school. Breakfast, lunch and now a program that gives them a fresh fruit or veggies in the afternoon. The food shelf also is has a program that has meals for the weekends and they where going to do something for the summer too. I grew up poor but even if I hated what we had we did have, but school lunch still was a big part of it. The job is about the students.

        • To the best of my knowledge, there is at this time no cure for autism. But there is much knowledge about behavioral interventions, methods of teaching autistic children, that can make a huge difference in their functioning and quality of life. There is also much research being done on medications that could ameliorate the faulty brain chemistry that results in FRX and autism.

          That said, there is a very fine line between accepting our challenged children for what they are, which we surely must do, and recognizing that progress is possible although hard-fought for, refusing to accept that there is not another way to improve, to get better results, to learn a new skill. And pushing ourselves to be loving enough, persistent, clever, attentive, kind, encouraging, committed enough to enable our challenged children to improve. The most difficult thing is finding the wisdom to know the difference between what can or cannot be changed. This has been and still is my constant challenge.

          Other family members are often naysayers, even highly educated people who ought to understand. This is sad, but we as parents have to trust our instincts, develop a thick skin, and go to bat for our children.

          • No cure yet for Autism, as they don’t understand how one person will have it and not another. We have been lucky to have school staff put in place a plan that works (IEP). He is in Special Ed for math, reading/english and gets speech. Everything else is in with the rest of the students and he still does great. They made sure that he was being challenged but able to understand the work. You are right, what fits one person with Autism or Aspergers may not fit the next. I think that this in it’s self makes it hard to understand. Son3 is great with history and WWII is what he likes best. He is a great artist and we are working on that, it also is a out if he can’t write it, he can draw it. He also took one year of the viola and did great. We give him the support he needs. I know as he gets older we will have new challenges, but will met them when they come. We parents do seem to know what is best and will go to bat for them.

      • All we can do is try to take it one day at a time and make the best of it. I don’t know from one day until the next how I will feel, what the pain levels will be, the fatigue levels. It’s hard to plan ahead and sometimes I have to bow out of my plans. But something inside me just won’t let me give up. Good for you, Lynne, for what you have helped your kids accomplish. Of course you hurt when your kids are hurt by others’ cruelty and thoughtlessness. That never goes away, whether they are ten or 20 or 40 or whatever.

  7. Sis, I understand a little about what you go through because my vision impairment is not readily apparent to all. And I’ve actually had people who DO know my limitations complain that I take too long to, say, ccok a meal. Truly infuriating. But I will admit that I didn’t understand much about pain until I experienced the osteoporosis-related lumbar compression fractures. So maybe I’m a little guilty in that regard, too. Anyway, praying for you. Love You Always.

    • Sis, the idea of people complaining about your cooking or anything taking too long just pisses me off royally. GRRRRRRRRRRRRRRR. You have always done a fantastic job with everything–yes, you have to take extra time and be that much more meticulous, but anyone who can’t understand that is short-sighted in the worst kind of way. Sometimes I guess it’s just hard to understand what someone else is going through until you’ve been there yourself to some degree. I think about Daddy’s problems with his poor back and how little sympathy he got from some quarters . . . . *sigh*. You know I will love and adore you ALWAYS, sissie.

      • Well, you & Benny have always been most appreciative and understanding re my hostessing efforts, and that makes me want to try that much harder when you guys are here. And I certainly hear you re Daddy. It’s really sad to think about now. Oh, well, he will never suffer physically or emotionally again. Love You.

    • Things like this infuriate me–it’s so easy to judge when they aren’t the ones. having to deal with chronic anything on a daily basis. Pain is so debilitating, and it’s effects so far-reaching on the mind and the body.

      • Yes, it is easy to make judgments and to criticize others when you have no notion of what they face or lack ability to empathize. Chronic pain wears and eat away at you–no wonder most people with FMS develop depression, it’s hard not to be depressed when it goes on and on with no end in sight! Thank goodness for the people and things that help lift our spirits and lighten our loads along the way.

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