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Chronic Snarkopolist: Focus on Your Boundaries – It Gives You Plenty of Attitude
Hello my loves! I missed you since last week!
This is NOT the column I wanted to write this week. This should not be necessary. Sadly THIS is the one that must be written based on the numerous comments and e-mails and twitter discussions I have engaged in lately. Many of us have already been told to “think ourselves well” more times than we can count. We have been told to adjust our attitudes, ponder our life, and read entire libraries of self-help books to “cure” ourselves.
Here’s the deal cats- I want you to know this just in case you forget- we all of us feel guilty for our illnesses from time to time. Baloney like being made to feel guilty from outside sources only reinforces this. But I’m here to remind you THIS IS NOT YOUR FAULT. Unless you made some sort of pact with a secret agent to infect your thyroid or destroy your immune system being sick is NOT YOUR FAULT. Ok. We all need to be reminded.
It is perfectly fine to read a book or blog and suggest them to each other if they help, inform, or inspire us. There are many patient advocate and positive healing modalities out there. What is NOT OK are the many negative methods some people use to throw more guilt and unnecessary blame onto the already ill.
This is all about positive boundaries. We need ways to say, “Thanks, that book or method has already been suggested to me.” If you REALLY love the person you don’t have to add, (“and it is a pile of steaming shit”). We need good easy phrases to quickly refute people who say, “You look fine to me – I don’t understand why you are on disability or not working or in the hospital or taking so many medications etc.” Generally, I like to acknowledge the compliment. “Thank you- I’m GLAD I look so healthy! Thank you so much for the lovely words! I cannot wait to get there 100 percent.” And leave it at that. Unless they are my physician or close family I owe them NO MORE than that. If they press more with less kind comments suggesting I am lazy or just don’t wish to be productive, I generally just have more firm boundaries and call it out. “Wow, you don’t sound like you’re being a supportive friend right now. Are you suggesting I’m a lazy bitch who doesn’t want to work after I’ve spent so much time, money, and effort to get through so many degrees and school? Do you think living like this is an attention seeking effort on my part? Friends don’t say unloving things like that to each other.”
To be fair – I’ve lost a sonic fuck ton of friends this way. Looking back I was bristly and cranky and most of the time I was more afraid than necessary. I wasn’t being open and was more ready to shoot people in the foot than allow them to be my real friend. As I got more ready to embrace my friends, my REAL FRIENDS stuck around and my fair weather friends left. So- I pushed a good number away with my own bad moods and fear, and a good number left because illness is scary. I’m sure you can relate.
So – try not to jump the gun with people you love. Try to see them as WANTING the best for you but just not knowing how to relate. See them as bamboozled and trying to help you. If you see them as having good intentions, it doesn’t feel so bad when they come at you trying to get you to feel better.
I love my sister. Last year I was visiting home and she said, “If you had a better attitude, you would probably feel better.” I wanted to stab her. In fact, I envisioned stabbing her with my salad fork. I’m pretty sure the muscles in my right arm still ache from holding back. But I LOVE her. I truly love her. And I realized she is just one of those people who volunteers regularly, sees the cup as half full, and was trying to say the right thing. In the end, she is family. I walked away from confrontation because at the time I didn’t know how to say, “My attitude might suck but I’m going through a divorce and I’m sick and I’m sad and I just feel like crap during what is usually a festive family time of year.”
It took me several months to realize she meant NO HARM. Looking back, she and I spent more time together and each time she did her best to relate to me. She tried her best and I tried my best. She was not the enemy. You have to pick your battles. I’m glad I didn’t start a family drama with her because I NEED my family now more than ever. She’s a good sister. She, like many people, simply didn’t know the right thing to say. Sometimes we have to teach people the right words.
So- yah, it is on us again. If people don’t take efforts to hear us or love us, if they continually blame us, it is perfectly fine to have more boundaries. There are many ways to have boundaries. But NOW is the best time to begin enforcing them around people who blame us, attempt to inflict unwanted or undesired “healing modalities” on us, or make us feel bad about our selves.
How about you? Have people ever blamed you for being chronically ill? Have you ever been given an unwanted self-help book or snake-oil cure-all potions for what ails you? How have you handled unkind or blaming comments? How have you changed or grown? How do you see boundaries helping? Is it OK to practice having boundaries so you are safer now? Is it fair to “assume” people want the best for us so we go in not feeling snarky and challenged? What do you think? Tell me! I must know!
I’ll be back same time next week! Kiss kiss!
Tags: being blamed for chronic illness, feeling guilty for having illness, lack of familial compassion when living with chronic illness, managing chronic conditions, managing chronic illness, not blaming yourself for illness, think ourselves well
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26 Responses to “Chronic Snarkopolist: Focus on Your Boundaries – It Gives You Plenty of Attitude”
Leave a Reply to Larissa Hooper
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It’s one thing when someone who is uninformed, well-meaning but obtuse, says or does something like this. It’s something else entirely when it’s someone who should know better.
I was just reading your previous post (about authenticity) and saw your comment about the doctor who told you, basically, that your lupus and seizures were caused by your bad attitude. Say what??? This person has a license to practice medicine? With living humans? You’re right, too, in a comment on that post about the language the medical profession uses; they will say that the patient failed the course of chemotherapy. Huh, it’s usually seemed to me that the patient was hoping and trying really, really hard, and that the drug failed to help.
With friends and family, it is often ignorance at the root of it. I’ve been told more than once (by well-meaning people with an obviously sketchy understanding of Graves’)that I should get on Armour. Gee, that could actually kill me, but thanks for the suggestion!
As I have raved about before, the idea that an ill person has in any way, shape, or form CHOSEN to be ill makes my blood boil. I guess the tendency to assign blame is another form of ignorance, or of magical thinking. The key is to be able to tell who is saying such things with claws in or claws out, who is actually casting blame, and who is trying to help, however ham-handed they may be.
The best boundaries we can have are the ones that keep us clear on what’s ours and what’s not. Someone telling us we are unwell because of a failure to live correctly (by their definition!), they own that. They are total shits, and don’t deserve any sort of reply beyond an incredulous stare. Someone clueless giving us useless advice or self-help books, “Thanks for sharing!” may be the best response. With someone as close as a sister, a well-placed clarification, like the one you wish you had given your sister, may well be the most productive and loving way to go. (I assume your sister meant no harm, and just wanted to see you less unhappy.)
Hello again Gravesey!!! Yes yes yes a thousand times yes!!!
Your quote:
“The best boundaries we can have are the ones that keep us clear on what’s ours and what’s not” – has come at THE MOST perfect time for me — not only because I’m writing more about that – but because others have certainly been putting more and more on me.
YES. Nail on the head.
GIANT HUGS. Love your insight. It takes years of perspective to start building good boundaries and know how to defend our turf.
xoxo
Melissa
This is so relieving to read. I am in college trying to get into nursing school, and working two jobs. A normal healthy person would even be tired doing this, but I was diagnosed with Graves Disease at age 4 and had RAI when I was 10 because no drug treatments worked, so now I am hypothyroid. I take synthroid and cytomel and can’t even barely get out of bed each day. I feel so lazy…but I am tired, so tired all the time, and I just don’t feel good…people don’t understand. It affects my grades, my ability to have relationships, and my quality of life. People are always telling me to be OPTIMISTIC…or to GET A BETTER ATTITUDE and things will be better…but I am SORRY no matter how hard I try to keep positive my body is exhausted and sick. Thank you for writing this, it connects with me so well!
Hello Larissa Hooper,
I will tell you this you gorgeous thing — you are going to be ONE HELL OF A NURSE when you are done when it all. You know why? Because you will have walked a thousand miles in their boots. And when a patient tells you how they are feeling – YOU WILL BLOODY WELL BELIEVE THEM. You will be an ace patient advocate.
And I’m sorry that you’re dealing with some shit right now. IT IS A CROCK OF SHIT that you’re having to deal with so much. I hate that we struggle so hard with so much instead of just having ONE JOB or ONE SCHOOLING — ONE IS ENOUGH — not two or three or four AT A TIME.
GIANT HUGS. sooo much hugs. Keep me apprised of how you’re doing in your program and in your life. I’m completely on your side!!!! And keep up with the comments. DT matters. We as a supportive community matter.
xoxoxo
Melissa
”I wanted to stab her.” Felt like this more than once. Thanks for reminding us what’s important.
Thank you Ana for the lovely comment!! x
“I wanted to stab her.” That says it all. That’s how I feel when people say the things you talk about in this article. I need to go beyond that, however, and instead of just cutting the person out of my life maybe do what you did and think about his or her intentions.
I hate that I am in a place where I have chosen to cut all ties to people, especially relatives, when maybe I could examine the intent behind the comment or suggestion. Fortunately, I do have a couple of family members who are my strongest support by far, my biggest cheerleaders and the people who I can tell anything to and all I get back is love, acceptance, support and good, well-meaning ideas. I think b/c these family members I speak of are coming from a place of pure love, any suggestions they make have always been okay. These family members I speak of have recently started reading your column, Melissa. Once again you put into words things I just can’t articulate. xoxo
Hello beautiful Amy-
yes- it is so hard to walk the tight rope and figure out intensions…
People can be so hard– especially our closest family.
Love you WT!
always!
x
Melissa
Great article, Melissa! – It really hurts when well-meaning people get it so wrong, doesn’t it?
HD
Hey there HD! It does hurt!!!
Thanks so much for reading and for your comments!! You’re always someone who gets it and someone who has FAB advice for the care takers and the ill both!!
xoxo
Melissa
Melissa,
Love this. It “is” difficult when someone gives you that “buck up” advice. I have only gotten a few of those since my diagnosis. Mostly I just avoid the subject and hope people will mind their own damn business. Not exactly great in terms of “promoting thyroid awareness”, I know. Working on that. I think as I come to really, truly accept that this Graves Disease is never going away… then I will be more open.. which will bring more unsolicited advice…. crap…
😉
Amanda
Testing. Maybe replies just don’t want to go to you? Maybe I reply at the bottom.
xx
OK AMANDA I have tried like 30000 times to respond to you and it keeps kicking back. Not sure why. I have tried.
grwearrrrr.
I had a long lovely answer. Gremlins ate it.
LOVE YOU. VERY MUCH.
SHORT ANSWER.
XO
MELISSA
Yep I have had the same things said and attitude towards me from all sorts of people. Most uninformed people out there think I must be lazy because , hey , if I am taking the tablet I should be fine, (which I arent, I am on Levothyroxine) most docters have me down as a hypochondriac , and then yes , oh and then you get the other sort of people who tell me I am not being positive enough, and that disease is something we bring on ourselves. Yes I can relate to what you say in your post very much.
Hey Karen – thanks for commenting.So sorry this has happened to you. I find it all fascinating – mostly that a physician can test blood and find indicators of low thyroid and prescribe medication and still consider you anything but concerned about your health. Sounds like YOU need better doctors!!!
Yikes!
xoxo
Melissa
You know, I have needed both your articles lately and have just recently had a bad bout of system failure. Mind and body this time. I see so much negativity and I realize that I broke up with my boyfriend because I could not handle if he could not handle the ups and downs. I mean I didn’t even give him a chance to try to help I just pushed him away because in my mind he just couldn’t handle it. I am learning to LIVE with Hashi’s and that is different then just dealing with Hashi’s. Thank you for this perspective.
Hello Cheryl,
Yikes, I’m so sorry that you’ve had several sad things happening right now. Breakups are hard and body things are hard. Learning to trust your body is hard AND people make it even harder – even when WE need to have some faith in them.
Thanks for writing in and sharing. Keep it up. We’re all in this together.
xo
Melissa
Great article! As for me, I get frustrated enough at myself for forgetting things, “zoning out” at times, lacking energy, etc., so don’t need others pointing these out to me. I completely understand how you feel, Melissa!
Thanks for writing in Linda,
Yes yes yes!! we have enough guilt and shame that we put on ourselves for our own illnesses. I don’t think I address this enough. We just do. Maybe I need to write a column about self-blame. Thanks for the reminder gorgeous. And keep writing in. GIANT HUGS.
xo
Melissa
One of my friends has Lupus and is very active in her community. She was just telling me how hurt she is when her friends say that she shouldn’t accept that she has Lupus – shouldn’t even SAY she has it. They tell her that she should be healed, and imply that if she isn’t healed completely then it is something wrong with her. Not because she has Lupus, but because she isn’t a good enough individual to be cured of Lupus!
I told her that this is a problem with those individuals, not with her. They have trouble dealing with illness, weakness and prayers that are not answered (or not answered immediately, or exactly the way they wanted). They do not know how to deal, so they say things that are unintentionally very cruel.
This makes me feel very sad because it is easier to say “That lady is a bitch, forget her!” But when someone is so seemingly kind, but still so hurtful, it can be hard to know how to react without internalizing all those bad feelings.
Wow – thanks for writing in Carly,
The crazy thing is – none of us gets off here alive do we? You have your head on straight and I’m GLAD at least your friend with Lupus has YOU to at least put some sense into her. YIKES.
That makes me want to brass knuckle punch some people. Rawerrr for blaming people.
FLYING SIDE KICKS.
xoxo
Melissa
THANK YOU THANK YOU THANK YOU for writing this! It’s awesome. You’re awesome. Love and hugs!
You are so gorgeous and fabulous. I love your fabulosity. xoxo
thank you so much for writing this, it feels like a minefield. I have a tendency to believe people are trying to be nice and kind. I recently reached the conclusion that someone in my life was actually being deliberately a bitch despite pretending to be supportive and kind and on my side. And I’m slightly kicking myself for not standing up for myself more and sooner.
One of the comments she made was that I shouldn’t talk about my illness at work because she had worked with someone once before who’d had a stroke and when they returned to work no-one would have even known she had been ill because she didn’t show it at all. This person has a thyroid disorder themselved but is lucky that it is well managed. I wonder whether part of her attitude to me, which was undermining and downright strange, on reflection, might have had something to do with suppressed fear on her part, that she didn’t want me around being ill, because it reminded her of her own (unwanted) frailties. I do think other people’s fear of illness is a big part of the problem.
I can wish I had been better at setting boundaries with this woman but I have this tendency to think of myself as indestructible and able to deal with any shit so I just took everything that she threw at me, for more than 6 months.
Now though I’ve decided to resign and I am so happy to be out of there I can’t tell you!
Thanks for this post and for everyone’s comments, you’ve given me lots to think about.
Hello yallolorry – oh dear, do not underestimate a little brass knuckle punching to the face when in doubt. I might be about unicorns and rainbows. But when people are giant fuckheads – you need to let them know what is up. If someone is making your life miserable – come to me. I’ll give you some good -left right, left right advice. You know– like squirt water on you, towel you off like a boxer and help you whilst you’re in the ring.
YOU CAN DO IT. GO GO. Seriously – FUCK HER. You don’t need assholes in your life. Especially not passive aggressive fake ones. I’ve had ONE shitty job that was supposed to be my “professional dream job” at one of THE most prestigious places to work in the country. I lasted ONE hot year. I worked with COMPLETE ASSHOLES. Nope.
If I had been a little less nice and a little bitchier maybe I would have faired better. Alas, LIVE AND LEAR.
GUTTERSMACK- BOOM.
Here’s to getting out and moving on!
XO
Melissa
hey hey, yah, go, boom! thanks Melissa, I spent so much of my life not taking any shit from anyone and more recently I’ve chosen to become much mellower, how funny I straight away end up on the receiving end of such crap. I was there three and a half years and delivered some seriously outstanding results for them, this boss lady took over our team just after I got back from being off ill in the Spring and I had high hopes she was going to be great but I have never been able to convince her that I am any good. My lovely new doctor today snorted when she heard the story and said “she’s jealous”, well who knows. What I do know (now) is that practically the whole team is totally jealous of my decision to get out and they all hate working there right now, which is crazy because it is one of those “dream jobs” and should be great. Some people just don’t like to trust, respect or support their staff and with an underactive thyroid and adrenal exhaustion (my latest diagnosis, how d’ya like it?) the last thing I need is that kind of attitude around me. I told her she’s made my position untenable and I put in in my resignation letter too. That was as far as I’m prepared to go in the hitting back stakes. I’m proud I didn’t just slink away.
Oh thank you thank you thank you for the support!!
xo yl x