ME vs. MM: Guilt Trips
Karen Crowley's most recent Beacon column titled "Live Like You Are Living" struck a chord with me.
In the column, she discussed how some cancer patients meet their disease head on, how they want to live each day to their fullest and not give in, and how they're admired for doing so.
She countered this with the position that it's also okay to feel sorry for yourself, and that we may not always want to, or be able to, put our best foot forward.
As I read the column, it caused me to think about the perceptions and expectations we deal with as cancer patients. These expectations and perceptions may be our own, or may be those of others, such as family, friends, coworkers, patients, or medical staff.
The more I thought about this, as absurd as it may sound, the more I realized there are numerous ways in which having cancer and dealing with these expectations and perceptions can send us on guilt trips.
Perhaps "guilt" isn't the most accurate word to use in all cases. Depending on the situation, sometimes it may be a case of feeling uncomfortable or defensive, or perhaps feeling selfish or sorry for yourself.
I find myself quite often feeling guilty about not doing what I, or others, expect of me. Days when I don't eat as well as I should, or skip my exercising, and am not doing everything I can to battle my disease. Or days like Karen described, where you just want to curl up and take the day off. But then I feel guilty for feeling this way, when in fact I have it pretty good, all things considered, particularly compared to so many others.
Another situation I encounter occurs when interacting with other cancer patients. Invariably, when you meet other patients, you go through the litany of typical questions: what type of cancer do you have, how are you currently doing, what type of treatment have you had, what kind of issues have you experienced, etc.
In my case, I've responded well to treatment, so I basically say treatment wasn't too bad and I'm currently in remission. I've learned to generally not go into too much detail, or reveal how good I'm doing until I hear how the other person is doing. If the other person is not doing well and describes all the problems they've had, I start feeling guilty for doing so well given what they've experienced. I've even had it worse, where the other person actually exhibits resentment toward me, and I find myself feeling like I need to apologize for my well-being.
I think this relates to why I don't attend support groups. I've been asked to attend, and was told it would be good to have someone there who was successfully treated and doing well, because it would provide hope for others. Perhaps it would, but I think it would also be another situation where I'd be asking myself why I'm doing so well while all these others are not. And unfortunately, this ends up making me feel like I'm being selfish and only considering my own needs and not those of the others.
Then there's the situation I've only experienced once, when someone actually questioned whether I really had cancer given how active I am and that I sure didn't look like I had cancer. I felt like telling the person I would have to be a masochist to be driving back and forth to Ann Arbor for chemo every other week if I didn't have cancer. Talk about being on the defensive.
The other issue of note is dealing with the guilt I feel about the burden I may be on my family, particularly my wife. So far, the impact hasn't been too significant. Basically just the trips back and forth for treatment, the fun with dexamethasone (Decadron), and a couple missed vacations. However, I worry about what the future holds, and the plans we make that may never happen.
I admit that a lot of this is probably a by-product of my personality, because I tend to take a lot of this personally, I tend to set high standards for myself, and I have a lot of empathy for those that are suffering. But to one degree or another, I expect a lot of cancer patients have had some of these experiences, or similar ones.
Therefore, doesn't it seem to raise the question as to how our psyche can be so messed up that we feel guilty because we have cancer? After all, we are the victims, the ones with the life-threatening disease, and not the antagonist in this battle.
Peace, and live for a cure.
Kevin Jones is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi Kevin,
Thanks for dealing with this side of the story. I think guilt is precisely what I often feel as a ten year survivor of MM. Like you, I feel guilty that I'm stronger than others I sit with in clinic each month, I feel guilty each time I beat back my version of mm, and I even feel guilty when I meet someone whom I haven't seen for a while and they are surprised I'm still alive.
I don't, (right now at least), feel sorry for myself but I have begun to give myself credit for what I've been through. Thoracic surgery, multiple cycles of radiation therapy, four or five different chemo treatments, (Rev and Zometa right now), stem cell transplant, back and rib cage pain. All of it I can handle, and all I keep to myself, but I've endured this stuff while continuing to enjoy life away from it all.
It's a strange existance, extremely conflicted, attempting to be who we were while waiting for the proverbial sword to fall. But, those are the cards we've been dealt, and like you, Kevin, I'm playing them.
HI Kevin, I am in a support group, but no longer much at the cancer centre, so that is the main connection I have to people I have met during treatments over the last few years. Since I am well again I decided to try to volunteer at my local support group and also online, as you also are doing! It is a good 'fit' for my volunteering actually, since I have gained some knowledge of myeloma now. But I have volunteered in all sorts of organizations since my children were pre-schoolers, so that seems fairly normal to me to do that. Being in a local support group gets me involved with interesting projects too, such as a walk/run, and conferences, as well as social events.
The support group can also be sad, since there are many really sick people connected to it, but we do our best to carry on as a group. I have met some very interesting folks this way.
I don't feel guilty for surviving, just lucky.
Thank you Kevin for writing about something that has been bothering me for a while. I am finally learning to live with who I am at the time - in the present. If I need to rest - I am going to and it is OK. If I can do more, I will.
I too have felt guilty about not being "sick enough" to have cancer. I try to be glad for how well I feel at the moment whenever I feel the guilt demon clawing at me. I certainly wouldn't want to be sicker to "earn the label".
I definitely keep more info to myself than before to keep from defending myself or my condition. I would like to help others, but I haven't found a way that supports me also...
And Frank...I too play those cards, the other option, well it isn't an option is it?
Kevin,
I can relate complete. I find having Myeloma turns my emotions upside down and now that I'm in remission cancer denial has set in. It definitely an interesting ride.
Becky
I understand this. I feel like I have lost my independance as an individual. I feel guilty on my good days for having a good day. I feel guilty on a bad day for having to ask for help. I feel guilty for needing so much help so often. I feel like a burden to those around me. But mostly I just feel scared. And weak. Everyone keeps telling me how strong I am, but I sure don't feel it. I have a friend that helps me when I need it. He helps me with my meds. He helps emotionally. And he helps me financially when my needs outweigh my budget. And my daughter goes so far above and beyond anything I could have ever anticipated. It makes me feel like a loser. Like I'm the one draining everything out of everyone around me. I'm the parent here. I'm the adult here. I'm suposed to be the responsible one. I'm suposed to be the strong one. And here I am, I can't even take care of myself without help. It makes me sad. I've spent more time crying over having to ask someone to help me than I did when I was diagnosed with heart disease and cancer combined. I can face my terminal diagnosis a lot easier than I can face being a let down to those around me. It gnaws at me. It invades my thoughts, my dreams, my every day moments. I thought my life was over when my husband died. I was wrong. There is so much more pain yet to come.
YES! Once again you have mirrored my feelings! I'm in remission also and I see myeloma patients with kidney and bone issues that I don't have.....and I know at some point, that could be me. And yes, friends have said my doctor must have made a mistake bc I don't look like I have cancer. Sometimes it's difficult to know where to go with the feelings of guilt except to share with the myeloma community. Thanks for sharing, we get it!
Holy cow! If I had written my feelings on paper, every word you've just written would have been my words. The guilt I feel because I'm doing better than many, many other myeloma and other cancer patients can be overwhelming. I'm grateful that I am doing so well and know there may be a day when I'm not, so why do I allow myself to spend these beautiful days making myself feel this way? It sounds crazy when I say it out loud........allow myself to really think about it. I've got a lot of work to do. Living this way is such a waste of precious time. Thanks for writing this article. It's been a real eye opener.
Kevin, you hit the nail on the head. I had a situation similar to yours where an acquaintance questioned my having such a serious condition as myeloma because I "looked so good"....my healthy glow was probably due to dex! How I wish I only had anemia and had to take iron pills! I have learned to give few details to others about my condition and treatment unless I have to. I prefer it this way and I am much happier for doing so. I am also very happy to hear you are doing well. Terry L.
Kevin
Another thought provoking article to stimulate our mental and emotional juices.
I love life. I loved it before myeloma and I still love it today. When friends and aquaitences make expressions like "you are looking really good", they are telling us the truth and at the same time trying to be positive and cheerful. So that is good. No need to feel guilty.
My eye doctor told me the other day 'your optic nerve looks like crap'. That was also truthful and is indicative of someone who has glaucoma in their family tree. However I accept, that even though I look good, in the future I may not look so good (pun intended).
We should drive out the demons that make us feel that we somehow are letting our family or friends down. If our wife or son or daughter had myeloma, would we consider it a burden to give them our best? No way, so we must accept with joy the love they shower on us. A wise person once sad "there is more happiness in giving than receiving". So friends and family that give us care, financial support or whatever, are receiving that gift that comes with giving. That's why so many of us volunteer. No one could pay us to do the volunteer work We do, because then it would just be another job.
A friend of mine lost his son in a car accident this week. Knowing how much I love my son, I can't imagine the feelings of loss he is feeling. We as myeloma patients, survivors are here, alive today. Whether I spend the day holding down the couch because that's all I can do, or whether I spend 3 successive days landscaping in my yard like I did this week, we must love life and not feel guilty or a burden to anyone.
We must love life and do our best to love family, friends and aquaintances for all they do. No guilt is necessary.
We know what myeloma is all about. From the tongue of the wise ones there is a healing and a joyful heart has a good effect on one's appearance..
I used to get mildly annoyed when people told me I looked too healthy to have cancer. Then one day I saw a clinical report in which a doctor said that I had the appearance of a chronically ill person. I decided very quickly that it was far better to have people exaggerate how well I looked! We just have to roll with this stuff. People don't always know exactly the right thing to say, but I'm just glad that I'm still here to hear them say it.
Hey Kevin, you really hit the nail on the head with you article about guilt. At times, I feel so bad, I wonder how I could go on for years like this. Then, I see a disabled Veteran or someone on TV with much worse problems then I. I feel ashamed for feeling sorry for myself when I see these people. It's a battle, but there are plenty of people in much worse condition than me and the fact that I have lived in the greatest country and have really never wanted for anything and lived to be 62 years old, so far, I consider myself a lucky and blessed man. Glad to hear that you are still doing good.
Frank,
I hope I can also one day feel guilty about making it ten years. Good luck for the future.
Nancy,
I also do some volunteering, but not MM related - I've just never felt comfortable about support groups, though I suppose the Beacon site is a form of support group - just not real time and face-to-face. Not surprising that given my column this month, reading about how much so many others contribute to the fight against MM, that's another area where I sometimes feel guilty about not doing more.
Ranetta,
I think you have the right idea about dealing with your MM as the current conditions warrant. It's definitely better if we can learn to rejoice when feeling well.
Rebecca,
Couldn't agree more - this is definitely one heck of a roller coaster ride (I'd prefer Cedar Point).
Sharon,
Read Eric's post below. He makes some great observations on dealing with the aid that others provide. I also wrote about in my article from Dec 2012 titled Humble Thyself. I think it's important to remember the satisfaction and joy that we receive by helping others, and try to think of it from that perspective instead of being a burden - though easier said than done.
Kathy, Pam, Terry L,
I am always amazed when people reply to my columns and say they feel the exact same way or have had the same experiences. It's so easy for us to think we're alone or unique in what we're going through - I guess that is one of the benefits of a support group or network. And Pam, yes it sure does sound crazy when we voice these type of feelings - when I reread my column before submitting, I was sure people would just tell me a was creating issues where none existed and to quit whining.
Eric,
You have the right idea. We all need to embrace our successes against this disease and as you and Ranetta indicate, just live in the present, dealing with life as it comes along. Hopefully more of us can embrace that perspective.
Holt,
Great point to make. I also would rather have people tell me I'm looking well instead of telling me I look like crap. Perhaps we shouldn't always take what others say too seriously (like when they question whether we truly have cancer).
George,
I think it's in our nature to feel guilty when we see others worse off than ourselves. I feel this way many times when I consider the job and home I have and see so many that are less fortunate. However, I worked hard to get where I am and I shouldn’t feel guilty for it. Instead, I try do what I can to help others improve their lives. I think we should take a similar approach with MM and consider ourselves fortunate if we're doing well, and do what we can to be compassionate towards those that are not doing as well.
Yep. I first really ran into this from a person I met online and later we became correspondence friends. Later as my husband began to respond and do well and others around us did not, I began to feel it too. It's a delicate balance to rejoice in your feeling of victory in the face of those you have come to care for and admire who are simply not going to share in that victory on there journey. I continue to be grateful for Dave (and our family), while maintaining a strong relationship and concern for those less fortunate. I refuse to move away from them because we are in a different place. It's hard sometimes. In the beginning Dave felt guilty about everything. Guilty he was sick. Guilty he brought me 3,000 miles from where we had lived, from our friends, family and children. Guilty it was cancer. Guilty it was terminal. Guilty he was tired. Guilty he slept all the time. On and on and on. We had to have a heart to heart on that because it was truly impeding his focus to get well.
Sometimes I also remind myself, that the survivors were the ones who kept me going in the early days and that I hope we can do that for others. Great column Kevin. Its good to tackle some of the more difficult topics.
Amen Lori,
That is exactly what guilt will do...it will impede your progress. It will make you sicker than you need to be if you let it. If I can, I get out in the sunshine, take a walk, pet my dogs...watch cartoons-whatever it takes to get my mind off worrying...worrying...worrying.
Sometime ago I was told I was denying blessings to others because I didn't ask for or accept help very well. I have always tried to be strong and independent. That is my demon to let go of. It becomes more of a give and take - more balanced. You have no idea how you might be helping others by letting them help you.
Do what you can and be glad you can do it! That is my motto
Thank you everyone...it made my Monday!
Hi Kevin,
What a great thought provoking column. Guilt, have I felt that too - guilty as charged.
I think for most of us sometimes we feel guilty because we care for others. For most that isn't going to change. I also think that most of us would have felt guilt prior to our diagnosis for some reason or other. For example should I be a stay at home parent or should I go back to work? The current situation we find ourselves in (regardless of whether we have cancer or not)and all that entails requires acceptance of the things we can do and the things we can't. If the roles were reversed would we expect our loved ones to accept our help?
Our family was very fortunate to have supportive friends who set up a food roster when I couldn't cook. Some of our friends have the perception that I am a good cook - they would feel guilty that they bought a take away to give us, or they felt it wasn't as good as something that I would make etc. etc. They cared. They cared enough to help us when we needed it. Our family was extremely grateful (and well fed!).
With regards to my treatment, with all its highs and lows, I realise how incredibly lucky I am to be where I am.
Lastly, I like Ranettas comment. "Do what you can and be glad you can do it".