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.