guilt, blame & chronic illness(es)

This is a lecture. A lecture I’ve given myself many times. A lecture I’ve given to other people. A lecture I thought I’d post and give to you. Guilt and blame don’t necessarily come with chronic illness(es), but these emotions can. This added stress does nothing for your body, or your mind.

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We all, I think, carry guilt and blame from our pasts. Things we’ve done, intentionally or not, that we feel guilty about. Events and circumstances that rightly or wrongly, we blame ourselves for. These feelings can haunt us all our lives; sometimes we can challenge them, or shine such a strong light on them, we begin to understand, forgive, “bless and move forward.”

Past guilt/blame can make us a better person, or turn us into something else (even something we are aware of, and don’t like). We can try and rectify wrongs. Advocate for change. Write the visceral in blogs, help others; there are lots of etc.

We might become hard, or evil, or use the blame and guilt against someone else – shift the responsibility because we can’t carry it. Vindictive, destructive of ourselves and others. Again, etc, etc, etc, et al.

When chronic illness is added to the mix of existing guilt and blame – those familiar emotions, ghosts, demons, monsters that if forgotten, or overcome, or daily visitors become our way of thinking, our way of viewing the world. We can’t shake them. We are a product of our past – for better or worse.

We didn’t wake up one morning and say, “I think I’ll get chronically ill. Hey, that’s what I’ll make my life’s mission. A missionary for all the crap that goes with chronic illnesses.”

Some people gain a support network, others lose their circle of friends/family. If we are lucky, our spouse/partner/friend(s) will understand, and the love and caring that drew you to them will not fade because chronic illness is fading you.

You had no choice about getting ill. However, these people chose to be your life line, your care- giver, to remain the most integral and important person in your life. They picked you once to marry, to live with, to share. They didn’t kick you to the curb like the position people with chronic illness can find themselves. No friends, no spouse/partner, no family. Few trying to understand what you are going through. Those people choose to not be a part of the chronically ill person’s life.

Or, a wall is built, brick by brick, that separates you from them. They are your care-giver because of their own guilt. They can’t understand your illness; you can’t understand their pulling away. But you still share the same bed, the same space. But you are just as lonely as if you lived alone. Perhaps worse because you constantly blame yourself for the distancing. Don’t feel guilty. You didn’t build that wall alone.

But there are special people who believe you are ill, that you are hurting (mentally and physically), that you need their help/assistance more and more. With luck there will be a remission, a time when you can give back a little of what you receive.

When you’re chronically ill, you have too much time to think, to analyze, to worry, to stress. And, often not about your illness getting worse, the side effects of drugs, and the control health insurance providers can have over your illness(es) and your life.

You worry, you feel guilty because you can no longer contribute financially (and perhaps physically) to the family’s income. Disability can be hard to get; especially if you are dealing with chronic illnesses such as pain or fibro that don’t necessarily show up on MRI’s, can’t be “tested” in a categorical way, depends on your status the day the examination is done. But you go through the application process in hopes of contributing to the costs involved with chronic illnesses.

Not contributing is a huge source of guilt and blame with chronic illness – guilt and blame wrapped up as various packages, but still the same emotions. But you do contribute in other ways; ways you don’t see yourself. Perhaps your care -giver feels good about being able to help you in some way as you are both frustrated with the chronic illness and how it disrupts your lives. Perhaps they feel you have helped them get through things in the past. You are someone to come home to. To cook for. To talk to. To plan with. Play with. Be with. Again, they didn’t leave you; they want you to be a part of their lives no matter what.

It’s hard not to blame your self and feel guilty about what the family (two or twenty) can’t do because of your illness. And dreams that couldn’t/can’t be fulfilled because you are a drain on resources and a burden. That is not necessarily the truth; that’s how you feel.

Maybe your partner/spouse/friend didn’t accept all the realities of your illness. Maybe they were used to a different life style due to income not focused on your illness. Maybe they ignored warning signs about finances, health insurance and health care costs. May be their desire to see you as comfortable as possible blinded them to the change from double to single income. Maybe, like you, they need to treat themselves, once and awhile; it depends on what that treat is.

And in these troubled times, people lost jobs (and continue to do so) and had to take employment as a contract worker rather than a full-time employee. Or, take a job lower in wages, status, union or seniority protection  than they had before the crash. And, you feel waves of guilt wash over you; you begin to drown in blame.

These are just some examples of how the care-giver (if your illness is such you need one, or they feel they need to provide that “service” from the very beginning) could also be “blamed” for the current situation should that be a financial one.

Of course, the issues aren’t necessarily financial (sometimes the new job is actually better than the old even if the pay structure and health insurance payments suck.). There are so many other areas that your chronic illness can change in the relationship, and  vice versa .

There is no simple answer, no therapy/therapist, no medication, no alternative medicine, no meditation/yoga, that is suddenly going to remove the guilt and blame. But these emotions don’t help your illness; they can make it worse. Your body and mind are already under stress – you don’t need to pile on more.

It’s not your fault you got sick. It’s not your fault that you need to take medication and see doctors. You dread the added burden, especially if your spouse/partner/friend has to drive you to appointments as you are too sick to drive yourself, and public transportation doesn’t work for you (getting there or the state of your illness).

Enjoy any remissions you get – even if it’s just for a day. Let go of the guilt and blame. Feel special because someone loves you so much/cares about you so much they are willing to go through hell to be with in a relationship (of any sort) and help you as best they can.

That is not to say you can’t handle your chronic illness(es) on your own, or that you need a spouse/partner/friend(s)/care-giver to survive. If you are already in that situation, don’t blame yourself for getting ill. If you had a special someone who walked away because you became ill, or friends who couldn’t understand, or didn’t try to, don’t fell guilty. Again, you didn’t necessarily push they away (some people do), they opted to do this.

I hope you find a support network, in the virtual and/or real worlds, special people who try to understand, you love you unconditionally, who are willing to be part-time or full-time care-givers if and when you need that level of care.
But, please remember, what ever ghosts from your past that may haunt you, please don’t let guilt and blame from your chronic illness(es) haunt you now.

#HAWMC 5 — superhero: Mz M0n3y

As Mz M0n3y I would have the ability to turn empty prescription bottles into cash. With this ability, and the number of empty pill bottles folks with chronic illness have, I would quickly have the funds to start a very special foundation.

The foundation would give money to folks with chronic illnesses for the simple things, to add comfort and stability to their lives. Pay the utility bill. Purchase medication. Provide a service dog. Pave the way to see specialists. Produce scooters for mobility. Promise equal access to education for children with special needs. Procure adequate housing and access to services such as drivers, nurses, maids, renovators, disability lawyers, child care providers.

In other words, help with the day to day things that people with chronic illness face. So that they don’t have to worry about choosing between medication and food; knowing there is a clinical trial in a city they can’t afford to participate in; enable telecommuting when the chronic illness makes traditional work place and time structures difficult.

And, for folks who don’t like to feel they are receiving charity, they can consider the money a loan, payable at a monthly rate they can afford without interest. Or, they could do a version of “sweat equity” and help someone else who is dealing with chronic illness.

So, that’s my superpower – and I wouldn’t think of myself as a superhero. The folks that daily battle chronic illnesses with strength of spirit, heart, soul and faith. The advocates, the encouragers, the empowers, the huggers, the supports, the cheer leaders, the dreamers, the creative, the passionate. They are the real superheroes.


The Seven Deadly Sins (ca. 1620) - Envy
Image via Wikipedia

People tend to pick watchwords/words-to-go-by, a word or two to describe the coming year in December/January. I decided on honesty; to be honest to/about myself; and to be honest to/with other people (within reason, of course, sometimes true honesty will get you in trouble, alienate folks, and weaken friendships). And, I will warn you this is a bamble; I’m not sure my self-editor can make this less long and laborious to read.

For example, I have decided to choose my family without regard to marriage and bloodlines. Of my many in-laws, there are 2.5 I will continue to have some sort of relationship with. (.5 is because this individual has lost most of my respect, but circumstances are such that I need to continue to be civil, even if that’s not being completely honest). I’m keeping one cousin and one cousin-law; the rest of the blood-line relatives can go. Of course, I want and would love to keep my cyberverse family, if they’ll have me. I now can honestly say I have a family in a way that was impossible before.

I am honestly honoured by the blog rewards I have received such as the recent the candle lighter award, or the versatile blogger award. But, in my effort to be honest to myself and to others, I need to talk about what happened to me today. I never expected to be nominated for a WEGO blogger award: in 2011, my blog, like my life was in meltdown – virtual manic episodes of blogging to go with the real manic episodes – and health issues weren’t always the focus. As I traveled the cyberverse, I was happier to see how just many of the bloggers I follow were receiving at least one, if not multiple nominations. I was so glad that someone had written their nomination the way the nomination committee wanted them, and they were put on the list of winners. Today, I went to the nomination site, to check and see if all the names I hoped to see where there – and they were. Congratulations to all and I was glad that each blogger’s blog was going to get the respect, traffic, and honours deserved for humor, for information, for inspiration, for honesty, for advocating for others. You are all truly winners!

I know I’ve written about the evil gene that runs in my father’s family; how the gene breeds contempt and smugness, lying, cheating, and stealing. I don’t think I’ve written that in the helix of that DNA is pettiness, envy, and jealously. Today, perhaps feeling vulnerable after my first session with a psychiatrist, I let the gene whisper envy; became the lonely little girl who wasn’t asked to play jump rope and was always picked last for a team; remembered the envy towards those who were always included; who always were part of the game. Once you let part of the evil gene’s helix wrap itself around your thinking, it’s much easier for the darker demons to whisper “Remember, you’ve never been good enough at anything.” Don’t worry; I’ve gotten over the envy and am back to the original emotions of joy, happiness and satisfaction that such special people received the honours they deserved. It always takes a little longer to get over the “never quite good enough” part.

I’ve been reading blogs I wrote earlier this month, blogs about possibilities, taos of crossroads, of new directions, new paths. Yet, as much as I said I would, wearing the proper footgear, with a map and a language guide, take the well-light path; my new journey; my new direction; my new purpose, I’m still sitting on the rock at the crossroads; legs drawn up to my chest; arms holding my legs and myself together. I can see all the paths spread out: the brambly ones where I try to lose old demons and lonely little girl; the sun-dappled one, a bit overgrown, but with the potential for fairy lights. The well-worn, brightly lit path that curves gently and with promise towards a meadow full of wildflowers. Then there’s the dark path, with dead trees and overhanging branches, pools of deep dark water, with only tiny bits of light from a full moon to show the way. There’s another path now too, one that is only a blurry, vague trail, the stumbles over tree roots, the hills to climb shrouded in fog and cold mist; a path with many off-shots and possible dead ends. This path has no easy way back, no map, no trail of breadcrumbs to follow, no landforms to recognize and mark progress by.

You see I realized on Friday (reconfirmed today) that honestly I have only 2 choices right now (no matter how my battle with bipolar 2 goes). I either learn to accept that I’ll never be quite good enough “it” — for the job, the scholarship, the promotion, the team, whatever “it” is. Learn to accept this as part of who I am. Not to embrace it; but to face the fact without the usual crumbling into tears and recriminations. That these feelings of regret, guilt, and failure have always been and will continue to mark my life; are big part of who I am. Accept it this in the same way I accept I will always have chronic pain; I will always have chronic illness. To learn to live with never being quite good enough like I have with my physical (and I hope same day my mental) health issues.

My other option – fight it; to somehow let go what has been my life for 54 years. How do you let go of 54 years of not being quite good enough? How do you become good enough? What do I lack that others, the ones chosen for the team, the ones who get the promotions, who win the scholarships have? How do it get it? I’ve asked folks what it is, what I lack, but the answers vary and I become confused; but often the answer is if you’d been good enough “it” would have happened the way I wanted.

I send pixie dust to folks who I think need some magic and whimsy in their lives. Perhaps I’m hoping that will put some in mine. The trouble is, to fight 54 years of feeling you’re not good enough, you need to be strong; to be stable; to be willing to learn a whole new way of thinking, of being honest with yourself. You have to send a lot of pixie dust (sorry to the folks I owe a package of magic and whimsy; I will get my interest in doing things back.)

Folks with bipolar 2 are chronically depressed, and their manic episodes are often mixed meaning that they are depressed, irritable, and mad at the same time, but there is never the high of bipolar 1; never the feeling of power, of happiness, or control. The depression gets worse (ironically, antidepressants often don’t work for bipolar 2 folks). There are some shopping hazards (luckily mine is mostly limited to going slightly over budget with craft supplies and jewelry from dollar and discount stores being the worst culprits (4 boxes craft supplies I am donating to an art therapy program at a local woman’s shelter), but not to the level that bipolar 1 can reach. There are mental health issues on both sides of my family; uncles in my Dad’s family who were considered “off” before diagnosis like bipolar were made; my mother’s chronic depression (never acknowledged) made worse by the aftermath of the stroke and her deepening dementia.

I don’t know yet how much of my chronic depression is tied to being bipolar 2 (official mental health professional diagnosis yesterday, in case you’ve been following my trying to navigate the mental health care system). We (the doctor and I) are going to try the medication route for a month and see how I feel – will I feel less depressed (I’m pretty much rock bottom now, but antidepressants don’t work well with bipolar 2 folks). Will I feel stable; stronger; less vulnerable and always on the verge of breaking into tears? Will finally being treated for the bipolar 2 “disease” (not just the chronic depression) that has haunted my life give me the strength to do battle with the “not quite good enough?”

Trouble is, my next appointment is in a month – to see how the meds are doing, although I can call her office and leave a message, or call her cell if the meds are troublesome. We’re increasing my day meds (which might help with the depression) and changing up my night meds (so sleeping and tiredness will probably become an issue again. The stuff I was on would knock me out for 5 hours at a time, though my body slowly adjusted to it, and I did walk up during the night. I tended to have a 2 hour+ nap between hubby leaving between 7:30 and 8:00 and at least 10 o’clock (or later).

I had written that I would no longer go down that dark path; that I would leave the evil genes and evil spirits behind. That the dark side was something folks didn’t want to hear about. Not that I believe blogs always have to be upbeat, inspirational, creative, informative or funny – they can be true to the situation, especially when you are dealing with chronic illness(es) and chronic pain – the good, the bad, and the ugly. But even in the sometimes bitter, sometimes hard truth about fibromyalgia, ME, chronic pain, and other chronic illnesses, there is information, inspiration, laughter and gentle hugs.

But, if I’m going to be honest, blogging about my struggles with bipolar 2, how it explains the past and the present, means I will have to journey down that dark road at times. In addition, there is the foggy one; the one I think that will help me chose resistance or acceptance – I know something awaits me, though I can’t be sure of what.

I don’t know if or when I’ll have another manic episode. If it will be a mini-meltdown that a few tears and a determined trip to the trendy town I do my grocery shopping in will resolve, or if it will be a major one, landing me in a facility with a psychiatric ER and intake ward. Maybe the meds will do it? So, what direction do I take? Acceptance or resistance? Am I strong enough and stable enough to resist? Will I ever be? Is acceptance the easy way that will help me deal with the stresses of my mental illness, of finding a purpose, of moving on? I have no answers for these questions.

I will continue to give out the candle lighter awards; I still have several people in mind; it makes me feel good to pass it along; I hope it makes the people who receives it feel good too. These are inspiring bloggers; bloggers who, despite whatever chronic illness/chronic pain is part of their lives, still put humour, sense of possibility and perseverance; of creativity and passion into their blogs. They have lit many candles that have shone on the path, like fairy lights, others with these diseases travel.

There was a project I wanted to start: to show case the writing, the creativity, the artistic talent, the inspiration of folks with chronic illnesses/chronic pain display in their blogs. I didn’t know if it would be a website; a multi-author blog with photographs and videos. I thought it would be great if the artists illustrated the writers, and the writers added to the artistic side of things. Prose, poetry, drawings, paintings, masks, collages. Photographs, audio and video, songs, stories, and inspiration sayings. Maybe it would become an e-book, a published book, a DVD, a site that drew together the various folks who blog in the area of chronic illness(es) and chronic pain. So that with one click, you could see the art work of someone like Wendy and Judy; the realistic approach to their illnesses like Mo or sunshine and chaos, the incredible writing of Laurie; the heart-felt poems and blog entries of Tammy. (Not to leave anyone out – just using first samples that come to mind.) That’s just it: the project would make a place where creativity and inspiration overlap in so many different ways and forms. Now I know that it’s not a new idea, it’s been and being done well by sites like Chronic Babe, or the PFAM carnivals. I just thought that there are so many health-based bloggers who have so much to contribute on their own, and in conjunction, partnership, collaboration with other folks facing similar or different challenges. I seems to be the possibilities of collaboration are so many and so powerful.

I would still love to see such a project evolve. But, right now I don’t have the stability or strength to journey down that path, although I can see if faily clearly from my rock. I can’t ask anyone to follow me if I don’t have a map, let alone a plan. I hope perhaps by mentioning what my project idea was (not well described, but I wanted to get it out) that someone else will see it (or some version) as a worthwhile way to further unite the chronic illness(es)/chronic pain communities. I hope that this community will include those with mental health issues, too.

As to my path; I truly don’t know. And that is my honest (to myself and to others) answer. This crossroad is about more that finding a purpose, a path for blogging. It’s about finding a purpose and a path for my life.

Miss Chronically Creative: 3rd candle light award

Image by ismh_ via Flickr

{Double disclaimer: It’s been brought to my attention that the font and color scheme of my blog makes it difficult for some folks to read (as does my tendency to bamble (babble and ramble). I’m working on choosing a more visually agreeable template (may have to let go of my love of widgets, and descriptive summaries of blogs of note), and hope to have something in place soon) Due to the number of images I wanted to include in this post, I had to use Live Writer which isn’t really supported by any more. So I apologize in advance for the blog not looking quite like I had envisioned. Thanks for your patience!}

Emily Ruth is truly an inspiration. Despite her battles with fibromyalgia, inflammatory/rheumatoid arthritis, chronic fatigue syndrome and endometriosis, she has “a passion for encouraging and empowering the chronically ill.” As she says on her blog chronically creative: living creatively with chronic illness, “I’m on a mission to live creatively despite illness and hope to empower and encourage you to live a creative life whatever your circumstances. I love to bake, scrapbook, make cards and paint my nails! I also love to give stuff away and bless the socks off people I’ve never met. I may be chronically ill, but I’m also chronically creative, and it’s contagious!”


And Emily Ruth’s, Miss Chronically Creative, exuberance, crafting skills and abilities, misschronicallycreativecharacterturegoodcopyhonest and open blog entries, and facebook page are very contagious and habit-forming.


dream big from facebook page

Her goal for this year, “to dream big” means she will refuse to dream small – “determined to fight for old dreams and find new ones.”

Her kindness and caring for others is demonstrated in her project Random Acts of Blogging Kindness: “ a project that seeks to bless and encourage those living with a chronic illness who wholeheartedly blog with a passion to raise awareness, who rabkgoodcopybuttonwrite about their own struggles so that they may help and encourage others in chronic pain.

But, it is Emily Ruth, herself, who blogs wholeheartedly, with passion, and offers encouragement to others dealing with chronic illnesses and chronic pain.

To quote Emily Ruth again, “[b]logging is one way I deal and cope with chronic pain. I’m on a mission to live creatively despite chronic illness and I hope to empower and encourage you to do the same. I really hope that you enjoy reading my blog as much as I enjoy writing it.” Chronically Creative is Emily Ruth’s journey, “her search for contentment.” Her blog (and facebook page) demonstrate her skill at crafting, writing, and caring.

clip_image001Emily Ruth has light many candles; lights that have helped others to find their way through the shadows of chronic illness and chronic pain. I think it’s time Emily Ruth received recognition for all her good works and her inspiring courage and perseverance; Emily Ruth truly is a a candle lighter.

Kate Kresse, of Believe Anway, originated the Candle Lighter Award to: . . . “light a candle in the darkness that envelopes us all at times. I want to lighten loads and light the way. I gravitate towards positive people and positive blogs. I want to start a blog award that reflects my love for the positive in the blogosphere.”

Kate asks little of the winner – to link back to her comments when the blog been posted, and to, of course, if you choose, to pass the award along to anyone you feel deserves it. You can award it as many times as you like, all that Kate asks is that you link your post back to her site. will help you, Emily Ruth, to attach the candle lighter award to your side bar (thanks again to Kate both for initiating this award, and for the badge instructions, which I also want to thank dogear6 and Becca Givens  for helping me place my badge on my side bar. Thanks for someone who is less than techsavy.)

If you have yet to visit Chronically Creative (the blog or facebook page), you are missing out on an enormous amount of creativity and courage. As Emily Ruth says, “creativity is not impaired by illness . . .”