Living For Lamingtons: The Illness Scale
Before I was diagnosed with multiple myeloma, I don’t think I had ever really thought about the idea of an illness scale, with some illnesses being ‘higher’ on the scale than others. It is difficult to explain exactly what I mean, so I will start out with some examples.
If, for example, you had a cold, you’d probably agree that it would be much worse to have influenza. If you had a disease, or condition, that could be treated and cured, you would be likely to cope with it more easily than if you had a less easily treated disease or condition.
To take it a step further, if you had a cancer that can be treated and is unlikely to return, you might feel more fortunate than someone who has been diagnosed with multiple myeloma. And finally, if you have multiple myeloma, you might feel more fortunate if you had favorable cytogenetics and responded to treatment than someone whose prognosis and response to treatment was less good.
In my opinion, multiple myeloma is quite near the top of the illness scale, but definitely not at the very top. Actually, with all the new treatments that have been developed and approved in recent years, perhaps it has slipped down a little on the scale.
I don’t think I really ‘felt’ this scale much myself throughout my life. However, it was my myeloma diagnosis that made me become much more aware of it. I found suddenly that friends and family saw me in a different light. They were feeling, quite rightly, that the diagnosis had put me up the scale, and that their own ailments seemed somewhat trivial and almost less worthy.
For example, I vividly remember a phone conversation with my older brother soon after my diagnosis, during which I asked him how he was. He started to tell me that he had a terrible cold and was not feeling well. I sympathized and said that I hoped that he would feel better soon. He responded, “Marje, I don’t know why I am telling you this. What is wrong with me is so trivial, and it’s so ridiculous to even mention it when I think of what you are coping with.” I told him that I didn’t feel that way, but I know that he felt bad.
Similarly, a cousin visited me and told me that he had lost his sense of smell. We talked about this for a while, and then he said that he felt so stupid telling me this when it was ‘as of nothing’ in comparison to my myeloma. I, on the other hand, felt that his recent diagnosis was a big deal, and I was interested to hear about it and very sorry that this had happened to him.
I have many other examples of similar conversations. I feel sorry that because I am so far ‘up’ the illness scale that my friends feel that they cannot tell me, or are embarrassed to tell me, about what is happening in the medical part of their lives.
Although I accept that I am fairly high up on the illness scale, I am also very aware that I am not at the top. Over the last few months, two of my friends have so sadly had terminal cancer diagnoses. They are right up there at the top, and already one has died.
Another very sad point of calibration occurred two years ago when my husband was diagnosed with prostate cancer. It was awful, and he had a very tough time through diagnosis and treatment. Again, I was aware that his cancer was seen as ‘not as bad’ as mine. Further down the scale. I do understand this, but I don’t like it. Someone who had only just heard of Graham’s diagnosis said to me, “At least you are in it together.” I didn’t know what to say.
I guess it is quite true we are ‘in it’ together, and we are very fortunate to have each other. I hope that Graham can move down the scale, and I would very much like to slide down there with him.
Marjorie Smith is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
What a timely column, Marjorie, as my husband just came home from the hospital following a laminectomy. His muscles are very "angry," to use his surgeon's words, and he is having horrible muscle spasms as he heals from this procedure. He said that he didn't think his spasms are as bad as mine were when I was first diagnosed, but watching him go through this is pure agony. I almost feel sick to my stomach watching him endure this, and I have a whole new appreciation for all the caregiving he has done for me the past 11 years. Several friends have said the same thing to me, "I don't know why I'm complaining. Your situation is way worse." But there's always someone worse off than me, so I tell them it's okay. This is life and we can help each other out, no matter how big or small the problem.
Take care, Marjorie, and thanks for your encouragement.
This is very well said and deeply perceptive. I also find myself assessing others on this scale when they are diagnosed with something. When you get cancer, everyone wants to know “will you be ok,” not realizing this is a complex and slippery question. Early on I tended not to “count” easily curable cancer as “the same thing,” (though I never said it out loud), but I have developed greater empathy, and I now believe that those experiences may be equally traumatic for people who have never experienced being diagnosed with something that is incurable. Your kindness and empathy to your friends is notable and important, and I find that respecting other people’s scary and difficult problems (or even just annoying problems!) only makes us stronger and more resilient ourselves. Best of luck to you and your husband. I think both myeloma and prostate cancer are moving further down the scale every day.
Dear Marjorie,
Thanks for your perceptive column! I hope that both you and Graham can recover from your health problems too. When I look around, I remember people I met along my myeloma journey who were not so fortunate as I have been, either. Also, I have friends with neurological problems, such as Parkinson's disease and multiple sclerosis. So it puts all of this into perspective and having cancer made me more aware of the problems that other people are facing.
Seasons greetings to you both!
Dear Susan, thanks so much for your kind comments. I am very sorry to hear about your husband's illness and a wish him a good recovery. It is interesting to hear that we both face the same sorts of comments from friends and, as you say, we can help each other out. Every best wish.
Dear Molly, thank you very much for your comments which encourage me to continue to write columns! I can really identify with your description of the way in which we learn to understand the predicaments of other people. Hopefully this does make us stronger as you say. I hope the best for you for the future.
Hi Nancy, many thanks for your comments and good wishes. I think that your kindness and consideration continues to help many people around you. Best wishes from a frosty Scotland to a freezing Canada!
Very nice column, Marjorie. I think you are correct in speculating on the existence of an “illness scale.” When I was in the Army, we had a system of triage for injured and wounded patients. Those with the worst wounds or injuries were treated first. My husband has been living with myeloma for four and half years. He has also had prostate cancer and lots of skin cancer. I almost never bring up what ails me because it does seem so trivial compared to what he deals with on a daily basis (neuropathy, gastrointestinal issues, and headaches). When we travel to our cancer center, we see individuals in much worse shape than my husband and realize that they are higher on the scale than he is. We are grateful that there are so many options now for treating multiple myeloma and perhaps one day soon you, my husband and others will be seen as not so high on the illness scale.
Dear Patty, Many thanks for your comment. We seem to both identify with this strange scale! I know what you mean when you describe going to the cancer center and seeing people who look so unwell. It is a grim business. I hope that your husband has some respite from these horrible side effects. With every best wish.
Marjorie,
Thank you for writing this column, which so aptly describes "the illness scale" that I consider with my husband's myeloma. All along this scale, I've found hope and "silver linings" of comfort when I needed to tell myself that it "could be worse." Lately, there have been times when I wondered how many rungs were left as we climbed up from one unsuccessful treatment to another. I guess to keep climbing is the point though... as long as you can do that, there's always hope!
Thanks again for your column. Wishing you the best!
Dear Tabitha, many thanks for your comments. I think you have had a very tough introduction to the myeloma scale, just staying stable seems as if it would be a relief for you both. With very best wishes.
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page