I’m enjoying a two-day conference on the empowered health consumer (ePatients 2009) – one of the most enjoyable aspects being hearing directly from people with diseases (such as diabetes) who are living out the management of their conditions on-line.
I was taken aback late yesterday when one of the diabetes bloggers mentioned the constant GUILT that they labor under – and others chimed in to confirm this. This had not occurred to me before – just take your meds and manage your diabetes, right? Umm…no. It’s much more complex, apparently, and impacts people on many levels.
Later, while chewing on this, I realized that I did understand – I labored for decades under the relentless assault of undiagnosed and untreated depression, and sure enough, I lived with the guilt of it every day – not feeling the things I knew that I should, and constantly pushing the stone uphill every day in an unending cycle of self-doubt. Feeling like a burden to others. Feeling like I’m not overcoming.
So now this has me wondering – is this a regular “feature” of these long-standing, somewhat-manageable diseases? Even when you’re being treated? I’m very curious about the experiences of others with diabetes, or CF, or MS, or other conditions – are you taking your meds with a dose of guilt each day? Please give your insight in the comments. Your voice is important.
[and read this related post from Kerri Sparling, who has first-hand experience. The last sentence is the payoff]
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Meredith Gould says
First, I’d like to highlight the (therapeutic) distinction between “guilt” and “shame.” Guilt is defined as feeling badly for what you’ve done; shame for who you are. Given that, I wonder if people with chronic illnesses are feeling guilt, shame or some combination of both.
My guess is that shame is what’s driving reluctance to name and claim conditions/disease states; reluctance to assertively manage (denial); and feelings about not being able to accomplish/achieve. In other words, there’s something wrong with me…I *should* be able/better…” etc. Make sense?
On a more specific and personal level, I have a hidden disability that would probably qualify me to become a player in the e-patient world (because oh wow do I have treatment horror stories)…but I don’t. Shame.
And now I’m feeling guilty for not participating and perhaps offering solace (and laughs) for someone else.
Jenn W says
Hi Scott, by patient guilt, do you mean, feeling guilty for being ill/not well? For something always being wrong?
Jenn W says
Eek, I mean Steve! Let’s blame that on not having enough coffee.
I think all patients with chronic illnesses or depression issues feel guilt.
Diabetes guilt takes many forms.
You feel guilty because you have a chronic disease, and you feel guilty because society makes you feel guilty.
Society believes that diabetes is brought on by being “bad,” instead of genetics.
As a child who was diagnosed with type 1 diabetes, I felt horrible that my disease caused my family pain.
I also knew how much it cost my family financially.
As a diabetic or PWD (person with diabetes) I have the food police watching my every move.
Since diabetes is never the same disease 2 days in a row,
I feel guilt for unexplained high or low blood sugars.
As a PWD, you acknowledge the guilt and work through it.
You focus on the positives, and you try not to let it get the best of you.
And on occasion you tell the ignorant soul in the WholeFoods line who gives you the unsolicited advice that: ” if you just gave up all processed foods, you’d be off the demon insulin in a month,” to shove it!
Jenn W says
Using Meredith’s and Kelly’s comments about guilt – perhaps I am an unusual patient in that I have never felt guilt about having cystic fibrosis. Admittedly, it’s a genetic disease, so I always understood that it was “not my fault” that I had it.
The issue of blame is interesting when it comes to illness though, isn’t it? And complicated. I’m thinking of how, for example, Ryan White, a young hemophiliac who contracted HIV through a blood transfusion, was sympathized with, but homosexuals who contracted HIV through unprotected sex, were blamed for having the illness. Likewise, having a genetic illness such as CF is blameless…but if you have diabetes, as Kelly mentioned, it’s probably your fault, even when it isn’t.
Meredith – I think you missed a reason why patients feel reluctance to claim disease states – who wants to jeopardize a chance at employment? I have a healthy amount of concern about a potential employer finding out I have CF, as I don’t want to be discriminated against in the hiring process. With employers increasingly using search engines to research potential job candidates, I’m careful about attaching CF to my real name online. Although, since I’ve joined Twitter, I’ve found myself having more conversations about this kind of thing in this space.
Kelly – to your unsolicited advice in the Whole Foods line comment – just, YES. Daily I am subjected to health advice and/or questions when people hear me cough. Some of these people mean well, but many of them don’t, and either way how does me coughing give people permission to butt into my business? If you’ve really told these ‘ignorant souls’ to shove it, I applaud you!
Amy Fitch says
Steve, First let me express how amazing it is to me that you shared your experience with depression. As a person who has shared the same battle, I know how difficult opening up can be. Depression is another disease that people sort of “blame” on its victims.
As you know, I also have Factor V Leiden Thrombophilia, and your post is timely because I am currently experiencing immense guilt. Yesterday morning, I discovered a new blood clot, this time in my right calf. My “go to” response is guilt. I feel guilty that I tried to stay off coumadin by bargaining with my doctor to let me TRY Aspirin therapy and controlled diet. I feel guilty that I spent 2 weeks on a Vegan diet, increasing my soy intake slightly. Even though I was under the management of my doctor, I can’t help but feel like my dietary change contributed to this new clot. I feel guilty for having roadtripped 1200 miles with my kids to see U2, wearing my compression stockings less than I should have. When I don’t have an active DVT, I feel guilty that I can’t sit cross legged on the floor with my kids, or play hide-and-seek all scrunched up without thinking “My circulation is being cut off to the lower half of my legs.” Everyday, there are a million little ways I feel guilty for having this disease, for passing it on to 2 of my children, and for letting my condition run so much of my life.
Steve Woodruff says
Meredith, I think you’re on to an important distinction. Guilt implies moral failure – and it’s really hard to see how guilt can be attached to a medical condition that was brought on, not by any moral action, but just by…having DNA and living. I guess that doesn’t always stop the guilt FEELINGS, however, which can be crippling even in the absence of genuine guilt. How could Amy Fitch be guilty before a court of law for having Factor V Leiden Thrombophilia? How could I be rightly sentenced to jail for having imbalanced brain chemistry?
The shame, I guess I’m past now. Once I saw that my condition required medication, not more will power, it was a relief to simply own who I was/what I had and not worry about admitting it. I’ve gone public over the years because maybe others can be helped also. That’s far more important than keeping a reputation as some iron man.
Maybe if we try to abandon the misplaced word (and its associated emotional payload) “guilt” and just say, “I feel lousy about having to…[fill in the blank], that will be more realistic. I can understand someone feeling lousy that they can’t sit cross-legged, or that blood sugar gyrates. But it certainly isn’t a matter of true guilt, right?
Thanks for all the comments!
Kevin McNulty says
I have been diagnosed with fibromyalgia for three years, and I can tell you that I’ve worked through a lot of guilt/shame in that time. I still feel it at times. First, it is hard to suffer from a condition that is not well understood and that even some medical practitioners still do not completely accept. It’s like having to defend your existence constantly – then of course you begin to doubt yourself, like maybe the real problem is you’re just crazy. You wonder why you can’t just “push through it” or “play hurt” or “be normal”.
It’s especially hard (and I suppose similar to depression in a way) when your meds are working well and you feel good for a while. You begin to wonder if the pain was real to begin with, if it wasn’t all in your head. Then you stop taking your meds for a day or two and you realize almost immediately why you were taking them to begin with.
I could go on and on, but suffice to say, yes, you’re on to something. I’d be happy to discuss more offline if you’re interested.
Christine Kraft says
I love that you shared your “Aha” moment and that you took time to give that message some space. That’s Participatory Medicine right there.
Lisa Emrich says
Steve, very interesting post and comment thread. The topic of guilt is one which comes up often in the MS community online. Not just one type of guilt but the many forms it may take in our particular circumstances.
I have multiple sclerosis, rheumatoid arthritis, and chronic depression. None of these conditions can be controlled by meds alone, they require active participation on my part. And sometimes, no matter what you do or don’t do, the disease will flare up unexpectedly and uncontrollably.
Personally, I have encountered every example of guilt (or blaming) which has been shared above. From the guilt of not being to plan ahead comfortably and depend on being well on a particular day or having to cancel plans at the last moment, to the unsolicited advice which comes from both strangers and friends who do not live with the same disease or even from those who have the disease but in a much less form (these tend to be the folks who are anti-pharma and advocate diet only or LDN).
The guilt itself can come from living with an invisible illness. I may look normal and fine, even walking without a cane one day, but I really do need that parking space near the door because one round through the grocery store turns my legs into heavy concrete and jello at the same time. Others have actually confronted me with accusations of not being “handicapped.”
It’s interesting that Meredith mentions how she ‘should’ participate in online communities because she has treatment horror stories. My observation is that many of us who are considered patient opinion leaders do not focus on horror stories but just ongoing real life. The good and the bad, but mostly helping to educate and encourage others who are going through the same things.
Oh, just thought of another source of guilt. I run the Carnival of MS Bloggers and at the beginning I could read every post written by each blogger on my massive bloglist. Now, I can’t possibly read everybody any longer and I feel guilty about that.
One single patient can only be spread so far. Now that’s a reason we need so many leaders to help keep the community afloat, letting us all know that we are not alone in this.
Now I’ve gone off on a tangent but if you’d like to talk more about e-patients and online communities. I’d be glad to try to help represent our growing tribe.
ellen hoenig says
Steve, first, thank you for sharing with me at tweet-up and great post.
To both Meredith and others’ comments:
I agree its very complex. Having worked very intensely for four years with adhd adults, I can tell you that they may feel shame for having adhd that many think is a ‘childhood’ disease or worse yet made-up, but they also feel tremendous guilt for the neg impact of their adhd on their family and parenting…eg guilt to their children who are often late to birthday parties, sports or worse yet miss them all together, for the many school papers lost and not signed like other kids–and for many, the guilt that they passed their adhd on to their kids, and now watch them stuggle in an increasingly competitive world…And yes, they also feel lousy because they’re not getting done what they should and often not living up to their potential and perhaps out of work and/or many divorced….net: guilt, shame and feeling lousy! 🙂 Ellen
Another facet of this is stigma, a form of external imposed shame or presumption that you should feel guilty. It’s often hard to rally other patients with liver disease to be active in advocacy because people assume that everyone with liver disease drank themselves into the condition.
If you are taking care of yourself and doing the best you can with your treatment (and your best may vary from day to day), then you shouldn’t allow anyone to make you feel bad, including yourself.
You’ve prompted me to post on my blog in response, but in my opinion, diabetes-related complications are the result of diabetes. I live with type 1 diabetes – I’m not going to absorb the guilt, too.
(And on a lighter note, it was great to see you at the ePatient conference!!)
Steve Woodruff says
An interesting note: Kerri, it looks like both you and Amy Fitch (among the commenters) suffer from the Factor V Leiden affliction. So perhaps you two can compare notes…