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.

~ * ~ * ~ * ~ * ~

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.

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17 thoughts on “guilt, blame & chronic illness(es)

  1. wendy December 14, 2014 / 8:01 pm

    I’m so glad you posted this. I reblogged it. you knew I would. you knew I needed to hear it…..last week.
    it’s hard, but guilt is very hard not to have hang over you. Even when you are trying your hardest not to have it happen.
    I’m trying.
    it’s hard.
    I don’t really feel guilty that I’m sick. I feel guilty that I can’t do things. or that I want things as I would do them but then they aren’t done so I get angry they aren’t done and can’t hide it so much….then I feel guilty. oh it is so hard.
    guilt such a useless emotion, unless used for the reasons Judith spoke of.
    *sigh*
    I’m working on it. :-)
    I still love me…that counts right?

    Like

    • phylor December 16, 2014 / 6:07 am

      We all try so hard to not to be a burden, to contribute in one way or another to our family, friends, spouses/partners, etc. Guilt and blame about that situation, plus other guilt’s and blames that can come with chronic illness(es), are emotions that are hard to keep from becoming yet another set of demons.
      Still loving yourself counts an awful lot! A lot of people, including myself, with chronic illnesses or no, have a hard time with that.

      Like

      • wendy December 16, 2014 / 3:51 pm

        Remember, I love you….you are worth it. Open your heart and love yourself, you are a pretty great person! You will find you are a great friend to have.

        Like

        • phylor December 16, 2014 / 11:18 pm

          Thanks. Loving and forgiving yourself can be two of the hardest things to do. I’m working on it.
          And you’re a great friend to have, too.

          Like

  2. wendy December 14, 2014 / 7:54 pm

    Reblogged this on Picnic with Ants and commented:
    I needed to hear this lecture recently, and will probably need to hear it over and over …
    Thanks Phylor for “lecturing” us, and reminding us, that there is simply no room for all that guilt and blame in our lives. This is a post I know I will come back to and read over and over.

    Like

    • phylor December 16, 2014 / 6:09 am

      Thanks Wendy! Aw, shucks. Blush.

      Like

  3. hibernationnow.wordpress.com December 14, 2014 / 5:34 pm

    I’m guilty for sometimes slipping into the “before I had these chronic illness and after….” I deal okay with them every day, day by day but once in a while I will pause and take a step back and stop. Stop to think about what I used to do, where I used to go, and how my energy level was. I may even feel sorry for myself that day. But, as we all know, nothing good will happen from that, and then I soldier on with the rest of you. Happy Holidays or as much as you can.

    Like

    • phylor December 16, 2014 / 6:11 am

      You’re right, every now and then, no matter how well we might be coping, there will be days when we step back and think of how life once was.
      If you can get over those feelings, and move forward, without guilt or blame, then you are doing yourself (and your family) a very god thing. There is enough to deal with; no one needs that added burden!
      Thanks for stopping. Wishing you all the best of this special season.

      Like

  4. summerstommy2 December 13, 2014 / 7:25 pm

    I found this exceptionally profound my friend. I have a chronic disease but one of those that if I didn’t tell you you’d never know. Like one day I’ll be dead and you’ll ask what happened and they’ll say he had a chronic disease didn’t you know?
    I don’t think it has anything to do with the crap that has happened in my life, but now days living alone I can reflect on it and keep doing all the things the doctor says, well most of them, keeping to a diet is well near impossible when one drug works to make you hungry all the time, but I try, and fail and try again.
    I live in a country with a good health system, I pay private health insurance, it covers a lot of stuff like hospital stays, not that I have any but some times you need to go and have things done in a hospital and all that is paid for.
    My kids know about my situation, I tell them as mine is a genetic disease and if any of them hs been unlucky they too may have it. So far I think they are all ok.
    Mine doesn’t restrict me in any way, I just have to watch blood pressure, diet (shudders) and keep up the pills. At present I am doing ok, as my dr says he is trying to save my kidneys and the drugs I am now taking are working in their favour.
    I have never felt blame or guilt mainly because I don’t need anyone to care for me, I live day to day trying to enjoy what I have, as my brother said to me the other day, its best to get out and do things while you can and I agree with that.
    I enjoyed reading this post, I understand the value of looking positively at the future, after all its just around the next corner.

    Like

    • phylor December 16, 2014 / 6:33 am

      I think chronic illness gives you a different/new perspective on the future and what that means. Thanks for sharing your situation. With an “invisible illness,” unless you wear a t-shirt that says, “I am bigger than my disease X” no one might notice.

      As I’ve written before, chronic pain is that way. Just becasue I’m not rolling on the ground, doesn’t mean I’m not in pain. Nor, because I have chronic depression, I can’t have a good day when I laugh a lot.
      Good luck with the diet — I do/east things I shouldn’t, forget to take my pills, forget in general (dementia, here I come — possibly genetic on mom’s side of the family).

      Hard to keep to a diet if you have a drug that makes you hungry!

      It’s getting more balanced now. But when I first started two drugs together, I got into this cycle of only wanting to each certain foods til I got tired on them, then move onto something else. I didn’t lose my appetite, but the though of many foods I used to eat made my nauseous. Unfortunately, the “bad for you foods” were the ones I felt most like eating, lol.

      Writing is a good way to keep the blood pressure down, I think. It is one of my therapeutic methods for mental and physical pain — releasing the tension, and destructive emotions that build up inside.

      So here’s to the future, waiting around the corner for us.

      And, my thoughts go out to you and your fellow Australians — I had a computer and news “blackout,” so I only heard this evening about the tragedy in Sydney. Where a person is a “true” terrorist, or mentally unstable, or uses terrorism as a cover, the event is as disturbing. While there have been far too many of these rogue/lone wolf attacks, the entire Islamic community pays the price. It was true here in N. America after 9/11 and other later events.

      Keep safe.

      Like

    • Madelyn Griffith-Haynie, MCC, SCAC December 17, 2014 / 6:58 am

      Interesting that we/they dispense that “do while you can” advice to those with chronic illness, never thinking that life itself might be thought of as a chronic illness, in that it is always fatal.

      How many times have ANY of us decided to wait to “do” until a tomorrow that never arrives or arrives with a boatload of challenges we didn’t have yesterday? THAT’s when guilt frequently becomes chronic – or so it seems from here.

      Thanks to Wendy (Picnic with Ants) for her reblog of this wonderful article or I might never have seen it. It carries a message that can never be delivered too often.

      xx,
      mgh
      (Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
      – ADD Coach Training Field founder; ADD Coaching co-founder –
      “It takes a village to transform a world!”

      Like

  5. Curious to the Max December 13, 2014 / 3:21 pm

    I always say that the purpose for guilt is to keep us/society from doing what is illegal, immoral or unethical. Chronic illness doesn’t meet my criteria!

    Good post!

    Like

    • phylor December 13, 2014 / 5:04 pm

      So true! If chronic pain becomes illegal, I’m off to jail for a very long time!

      Like

  6. Colline December 13, 2014 / 10:15 am

    I remember when my mom was recovering from open heart surgery. She couldn’t do the simple things such as walking to the bathroom. She suffered terribly from depression as she couldn’t do the tasks she had been doing for years: cook, tidy the house, take us to school, garden. It took her many years to recover and there were some things she could never do again.

    Like

    • phylor December 16, 2014 / 6:37 am

      That must have been hard on her and the family. As you say, such inabilities can lead to depression, and both depression and the physical inabilities can take time to heal. It is unfortunate that she never regained all of what she had previously be able to do.
      As a child, it must have been very difficult to see your mother suffering like that! And, to deal with her depression.
      Depression, alone, can be a heavy burden for a child.
      Thank you for sharing your story, Colline.

      Like

      • Colline December 16, 2014 / 8:22 am

        I think it helped that I was 18 and my sisters 16. We were able to do the chores around the house – and we were able to understand why she was depressed.

        Like

        • phylor December 16, 2014 / 9:13 am

          That makes a big difference being almost adults. Sometimes it’s younger children who are faced with coming to terms with the illness and it’ consequences.

          Liked by 1 person

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