Two years into my cancer experience, I still had the nagging question: “Am I in denial?” I heard that cancer patients protect themselves in a natural bubble of denial in order to cope. Eventually that bubble bursts and you start dealing with the reality of your newly altered life. My bubble never burst. I never felt myself cross a threshold from denial to reality. I waited and waited, even tried to provoke it. Finally I realized it wasn’t happening because I was never in denial to begin with.
The first 24 hours after my diagnosis, I felt shock. I dreaded calling my mom and dad to tell them I had cancer. I went to class that night like nothing was wrong. I took my teacher aside afterwords and said, “Hey I was just diagnosed with cancer so I might need to go to a few doctors appointments.” But the next morning I woke up and it just sank in. I have cancer. I have cancer. I have cancer. It was a really profound experience to feel those words being absorbed into my mind. I felt extremely compelled to keep my eyes wide open and walk forward. I didn’t want to push cancer away. I accepted it into my life immediately.
I think part of the reason why I couldn’t be in denial is because I had nobody else to take care of me or to fight for me to get health insurance. Not always, but sometimes, denial is a luxury. In small doses, denial seems like a benefit, a nice place to visit. It was a bitch to have cancer on my shoulder 24-7 and I wouldn’t have minded dwelling in denial a bit to get a mental health vacation from it all.
So why not denial 24-7 instead of the bitch of cancer? Denial can pose a serious risk if it keeps you from getting medical care, from meeting the reality of your needs, or if it severs relationships with people who are walking in the real world.
Maybe that’s why there’s a lot of judgment placed on the word denial: “You’re so in denial!” (Who ever says that in a kind tone of voice?) People are accused of being in denial. The word stings and has a bad rap. Should it?
Have you ever felt like you were in denial? Did it serve you well? Have other people accused you of being in denial ?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
February 12th, 2010 at 11:32 AM
I can honestly say that I haven’t allowed denial to take over. I’ve never been able to live my life in denial. It just seems so much harder to pretend that things are “okay” when they really aren’t.
My diagnosis in August 2009 came on my last day at a job I’d been at for over 9 years. I called my boyfriend and my sister to tell them, but otherwise, no one else knew. After work, I was meeting friends for drinks to celebrate my escape from a dysfunctional workplace. I sat in the pub with my friends enjoying a glass of wine, appetizers and conversation, but in my head, “I have cancer” was playing over and over and over. Today, I can’t remember what I ate or what we talked about. I was in shock (but not denial). Dazed and confused I think is how Led Zeppelin put it.
No one has ever accused me of being in denial about my cancer (or anything else for that matter). I’m a realist. I face life head-on. I don’t mince words and I don’t use euphemisms when talking about my cancer. When people ask me what kind of cancer I have, I don’t whisper the word “rectal” even though I know it makes people extremely uncomfortable (they usually raise their eyebrows and say, “OH”). I think some of the people in my life are in denial about my cancer because they can’t face how prolific cancer really is. They’d probably prefer it if I was in denial because it would make it easier for them.
I understand how people fall into denial but personally I’ve just never been able to live that way. If I did live in denial, I wouldn’t have gone to my doctor and had the colonoscopy. My surgeon told me that if I’d waited until I was 50 (I’m 46) I’d have been faced with Stage 4 rectal cancer. Denial would have killed me.
February 12th, 2010 at 2:37 PM
My husband has cancer, I am the caregiver. He has not only been allowed to steep himself in denial, he has reconstructed his whole world around it. While it did serve to get him through some of the worst of treatment, it has excluded most of the world, including me. I’m not sure where he is mentally, I have NO CLUE what he has going on physically and it has left us with no marriage.
He stays home now, since being declared disabled, and is the househusband while I work. He doesn’t talk to me, he has no friends and most of his family doesn’t speak to us because this is “hard”. We don’t go anywhere, we don’t do anything couples do (including sex) and are polite roommates. All attempts to reach him are held at a silent distance and Kaiser no longer offers couples therapy. When I went to an outside counselor he was silent. He answers questions monosyllabically and politely but either isnt willing or able to do more. Chemo brain? I don’t know, possibly.
Many have suggested depression but his therapist says no, he’s “fine”. It is not fine to live this way, and now instead of being involved in his care, I have built my own life around me. I have told him I am here for him, if he wants or needs something he just has to say something but its been 6 months of silence…and nothing…I am surrounded by caregivers, friends and survivors. I see how they live but that’s not my life. I am sad, resigned and “hope” someday whatever world he’s caught in let’s go.
February 12th, 2010 at 4:01 PM
For me it’s not so much denial as just a lack of personal cancer awareness as I go about my day. At 28 I have one friend with dormant MS but none with cancer. I’m currently prepping for (thyroid cancer) scans and treatment and usually keep the situation quiet. No one at work knows. I did explain to some of my roommates about going hypo and the diet but didn’t say why I need scans. If any of them googled my clues they haven’t led on, which is exactly how I like it.
I don’t want to be known as the roommate who has cancer for many reasons, but the biggest is that I’m just not sick enough to qualify for people to worry. Hypo sucks but I’m good with it. Even now, during the coldest month of the year, I’m only vaguely aware that my fatigue is due to cancer. Other than some (really gross) residual saliva gland issues from past RAI treatments, I haven’t physically felt cancerous. My endocrinologist swears he’s not scamming me and he’s a good man so I take his word for it.
I know I’m lucky to be relatively physically unaffected by cancer (finacially is another story). In the hospital I feel like a fraud waiting for scans when sitting beside patients struggling with going hypo or when I pass the chemo room.
Maybe this detachment (denial?) is what keeps me calm. I once read that if people could truly acknowledge the magnitude of how ridiculously risky it is to drive then we’d never get behind the wheel. Fortunately human nature allows us to take care of business. For me, I guess, cancer is the same way.
February 12th, 2010 at 5:29 PM
I am a caregiver. My son was diagnosed with stage 3 hodgkins disease 16 months ago, at age 15. He went through six months of treatment. He hasn’t found the strength to talk about what he’s been through. He internalizes how he feels, is this a form of denial? I don’t think he wants to be identified as a person diagnosed with cancer. It makes him nervous to think about going to a support group. I think he is scared, I think he still feels vulnerable and worries that the cancer will return. He’s not ready to tell his story because he doesn’t have enough distance from it yet.
I hope he finds a way to draw strength from his experience. I think it would help him to talk about what has happened. He sees a therapist but I really think he would benefit from a cancer support group. He has fought the bravest fight and won the biggest battle, now he just needs to find the words. I believe they will come when he is ready.
February 13th, 2010 at 1:14 PM
Maura, why do you say your son hasn’t “found the strength” to talk about his illness? Does that mean one is strong if one talks? That he’s somehow weak if he keeps things to himself? Some people, that’s just their way. Some people never find strength from a bad experience. It’s not always character building. It is just a bad experience and then they move on.
If he’s not talking, you have no way to know what he’s feeling. It might be some of the things you guess about and it might be completely different reasons.
You sound like a very caring mom, so I don’t want you to take this the wrong way, but unless he’s talking about what’s going on, you really don’t know what it is, and you don’t know if it’s denial or not… everyone needs to find his/her own way. I would guess this to be frustrating though.
I am glad he has a therapist. I hope that person helps. PS not everyone likes support groups. I for one, get nothing from them and so I have decided there are other things that work for me. They are not for everyone, so hopefully his therapist can help him figure out what works best for him.
Also for some of us, the biggest battle is not the cancer itself, but what happens after.
I wish you the best.
February 13th, 2010 at 1:45 PM
Interestingly enough, our family doctor has advocated for some “healthy denial” (her words). In her opinion, having a modicum of denial allows us to live through even the very tough times. SOme of that is just putting cancer out of our minds when we are in between treatments, allowing ourselves to live life for the NOW without always worrying about the past, the future, the illness, the “what ifs.”
Denial is actually difficult for me. I tend to migrate towards the other end, wallowing in fear, often enough. I am very well aware of the reality of my situation.
February 13th, 2010 at 6:38 PM
I didn’t have any denial, though my coping mechanism for pretty much anything that needs to be “fixed” is, “OK, now we know the problem. How do we fix it?” I’m very goal-oriented that way.
As I’ve mentioned in other posts, I also have training in creating effective affirmations and visualizations, and I used them as a way of life. I explained very explicitly to my inner circle of caregivers (who were free to explain to whomever) that I wasn’t in denial — I knew exactly what was going on — but that I was choosing to look past it, to live in the future as often as possible. Before I had my first chemo treatment, I spoke of having cancer in the past tense.
The counselor at the hospital, despite my explanation, said I was in denial. There’s no way out of the accusation — either you can agree, or you can argue, which is just adds fuel to their argument.
Months later, in another session with the same counselor, she said she could see now that I wasn’t in denial, that that was just how I function. Would have been nice if she’d actually listened to me the first time, but it was nice for her to let me know that her opinion had changed.
My aunt told me to “accept the new normal.” I did not. Again, not because I was in denial of it — I was completely aware that I went from training 6 days a week to 0 — but because that was not how I planned to spend the rest of my life. And though it’s taken a lot of work (and there are still issues and roadblocks), I’m back to training 6 days a week. Still not as strong as I used to be, or have as much endurance, but it will get there…
February 13th, 2010 at 6:51 PM
Karen, you and I are birds of a feather, right down to quoting Led Zeppelin.
Loran, it is hard to read about the situation you are going through so I cannot even begin to imagine how difficult it is for you to live it. I am curious to know if you have a therapist of your own, if it is something you want, or if it seems like it would be useful. In my book Everything Changes, I write about an online organization called Young Cancer Spouses. Their discussion board is password protected and strictly limited it to spouses. They let me lurk for a day so I could see what the discussions are like and write about it. It isn’t flower and roses Hallmark card support. There were a ton of spouses going through really thorny relationship issues and plan old hard crap with their cancer spouses. Perhaps it is a community where you would find some ideas about how others in your shoes are making their distant, rocky, and demanding marriages work.
Andrea, Maura, Alk – One person’s denial is another person’s reality. It is all so personal. I think the best comparisons we can make are not necessarily how anyone else walks through the world of cancer but how over time we ourselves do or do not shift in the degree to which we acknowledge our illness to ourselves and to others. And, to borrow the extreme cliché from Woody Allen’s newest (and I think best) movie: Whatever Works.
H Lee D - I love how you explained to your circle of friends and to your counselor what was going on for you. While your counselor wasn’t able to recognize that as a serious sign of clarity, I’m glad that she came around in the end and was able to see and acknowledge where you really are. Your comment here has really helped me understand more how you work with visualization. Maybe you could write a guest post for my blog about it sometime…
February 13th, 2010 at 9:09 PM
I don’t think I was ever truly in “complete” denial about my diagnosis, but I would let myself have fleeting thoughts of denial during the 6 wks of waiting for surgery. “Denial” being thoughts like, why not just pretend this never happened and just don’t go through with the surgery, don’t go back to see any doctors ever again, and just see how long you live. Thinking things like, maybe the thyroid cancer will never actually cause any problems since it’s slow-growing, so just don’t do anything about it. Also, questioning the thyroid nodule FNA cytology result, even though it wasn’t even reported as a questionable diagnosis. Getting a second opinion on the pathology helped quiet some of these irrational thoughts of denial that I had. I think that’s the type of thinking that actually is irrational, not truly helpful, and constitutes being in “denial.” How much one opens oneself up to others about their diagnosis, and/or how much one actually thinks about it during each day, I think just is different for each person’s coping mechanisms and has nothing to do with being in denial or not. I was also definitely “dazed and confused,” and heard in my head over and over, “I have cancer” that day that I got the diagnosis. Who know, perhaps I still have a little bit of denial over what the future could be, b/c I still haven’t told my parents about my whole cancer ordeal and am hoping it will never recur and they may never need to know (hoping my neck scar can actually heal invisibly someday).
February 14th, 2010 at 7:16 AM
I think I was ‘in denial’ during my symptom period (the 8 weeks prior to my colonoscopy.) I can remember seeing those March commercials for CRC awareness and thinking to myself, well, whatever I have at least it’s not cancer. And for all of 48 hours after my failed ‘scope, I was probably in full denial. The GI doc couldn’t advance the scope past my rectal tumor to complete my ‘scope, so they didn’t continue pushing the sedative. I was aware and listening to all the furor happening around me, lucid long before anyone in the room was aware that I was awake. In that office I got referred to an oncologist and a colorectal surgeon - appointments that were only two days away. Even if I hadn’t woken up early, I was smart enough to realize that nobody gets referred to an oncologist or surgeon from her colonoscopy unless it’s cancer.
But I didn’t tell anyone what was going on in my head from that first appointment in late Feb. with my gyn right up until my appointment with the surgeon and oncologist on the last day of April. I was losing weight (18 lbs. in six weeks) and I think I finally told a friend who’d complimented my new figure that I thought I was losing weight because something was wrong. But the gyn had mentioned IBS, and so had my primary care, and I was more than willing to go with that dx. It couldn’t be cancer.
The day after my failed scope, I emcee’d a roast for a retiring co-worker. I knew then that it was probably cancer, but I didn’t tell anyone I worked with. That Friday afternoon I found out that it was likely stage IV, and I’d be starting chemo in five days to try to buy me some more time. I went back to work to see if I could catch my boss (I missed him) but I did tell a friend, and broke down. I told my neighbors that evening when we were walking dogs together. My sister-in-law had been with me at the appointments, my sister and I went to tell my parents that weekend, I called my out-of-town brothers and uncle.
My oncologist had made clear that my treatment could kill me. I didn’t have time for any more denial, any more ‘maybe it’s X.’ It *was* cancer, really serious and most often fatal cancer, and I had dogs to provide for, parents with advanced medical issues that would need my siblings to start stepping up immediately, major work projects that would need to be backed up and maybe transferred. I felt like Karen - the ‘I have cancer’ reality was there as soon as the words were out in the open.
Where I do feel a little denial creeping in these days is during extended remission. I’ve now moved to the I-have-cancer-but-I’m-not-dying-today place…and that can slip very easily out of awareness and into denial. But to me, awareness always feels real and I *like* feeling real. So I tend to be uncomfortable around denial. It makes me feel as if who I am and what I am experiencing isn’t valid.
February 14th, 2010 at 3:24 PM
I use a bunch of coping strategies but don’t think I ever really used denial much. In my case, my parents used it to cope. This I found incredibly frustrating. They don’t want to have to deal with helping me, so it’s better to pretend things are fine or not ask how I’m doing at all. This is super annoying when things are already hard to deal with, and even harder since they cant help me, and then on top of it, they have to act like everything is great now and not acknowledge what I’m going through. And I’m all for using “whatever works” when it comes to coping (liked the movie too), but it’s unfortunate when that “strategy” is hurtful to another person, like me;-), or when it interferes with my own coping, and makes me have to figure out how to cope, with their lack of coping.
Before diagnosis,when faced with having to get biopsies, I got yelled at by my mom, telling me it wasn’t cancer and I was crazy for getting surgery. Same thing when facing possible recurrence. a recent scan showed something that may or may not be cancer, when discussing this, again, I get yelling that I’m sick in the head and cant get it back that soon (eventhough my cancer has a greater recurrence rate within the 1st year or two of treatment.)
Anyway, I thought it was ridiculous that things were hard enough to deal with and then I have to get yelled at for taking the necessary actions.
Ha, granted, I know my mom is crazy, and should just brush it off. Usually I would, but there’s something about feeling so sick that lowers your tolerance for this, and eventhough I know how my parents are, there is still some little bit of hope or something I guess, that in times of real need, maybe they’ll come through. Ha, I found it! Just typing this now, I guess that’s how my denial manifested. In thinking my parents would be different;-)
Though I don’t let that denial hurt me, for months now, I’ve had to be proactive about relying on non-profits, friends, strangers, etc for help. I think it’s more of denial/hope combo maybe. Instead of completely giving up on them, which I had done for several months, I now try to accept what it is. I understand their situation somewhat and why they are how they are. I recognize that I just can’t expect them to help with most things. But, here and there, sometimes they will, with small things, of their own choosing. So I guess that’s why some denial or hope remains. Even in general, I guess it’s that small possibility of the good happening, that keeps us hangin on, helps us keep going.
February 16th, 2010 at 9:59 AM
Kairol, I would be delighted and honored to write a guest post for you sometime. Keep me posted.
February 17th, 2010 at 10:47 AM
I don’t know if I was ever in denial but I definitely have felt, and sometimes still do 3 and a recurrence later, that it hasn’t actually happened. Or maybe the better way to describe it is surreal. I have been through lots, mastectomy, chemo, radiation, herceptin, tamoxifen, metastasis, more radiation, lupron, femara, and zometa, all in 3 years. I am sure that feeling it is surreal of not actually happening to me is some sort of defense mechanism my mind has applied to this horrible situation. But I of course know that it has happened to me, I rub lotion on the scarred, discolored flat left side of my chest every morning. I see pictures of me hairless, I remember less than a year ago when my throat was burned from radiation so I had to take many meds to eat and drink enough to keep me going every day. I know it has all happened and it has been horrible, but I choose not to dwell on it. Is that denial? I don’t think so, I think it is making a choice to focus on the good and the positive and keep moving forward.
Thanks for the post and the chance to comment on this great topic.