Mental Health – Page 3 – Frantic Shanti

Patient vs. Survivor: The Impact of a Label

^{(Photo by Joshua Hoehne on Unsplash)}

The first devastating realization I had following my breast cancer diagnosis was that I was now a cancer patient. In my mind I immediately went from “happy-go-lucky, fitter-than-average” to “sick beyond belief”.

Except that nothing physical had changed. But my mindset had. And when I found out that my triple-positive tumor was going to require chemo, I knew that everyone else was going to be aware of my hairless, frail status.

Cancer. Patient. I imagined myself pathetic and scrawny, walking around hunched over in a hospital gown with light shining off my bald scalp. Sounds dramatic, huh?

How do your labels affect you?
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Recently, however, I learned that there’s been a change in the language surrounding those individuals who have been diagnosed, are undergoing treatment for or have finished cancer treatment. The word “patient” as it relates to someone’s status has been supplanted by “survivor” much earlier in their cancer experience.

This is curious to me because I went through a mini identity crisis after I was done with chemo and radiation–I thought that only then could I start calling myself a (hopeful) cancer survivor. But I was a bit anxious about doing so, because I didn’t know whether I truly deserved that title. I thought that I needed to have some special designation before I qualified as a survivor.

These days, the survivor label is given when you receive a diagnosis. The idea is that while initially we didn’t know your status, now that we’ve confirmed your tumor, you are going through the experience of surviving the disease. As stated on the Cancer.net site, “When people talk about ‘survivorship,’ they are usually referring to navigating their life experiences and challenges resulting from their cancer diagnosis.” Read more about how ‘survivor’ is used here.

This sounds a lot better to me than using the term “patient”. By referring to myself as a patient when I didn’t have any reason to–meaning no physical symptoms–I was imagining myself sicker than I really was, which increased my anxiety levels. That made my entire experience worse and it didn’t have to. I did that to myself (‘cept that I was only using the common labels of the time).

How are you choosing to define yourself?
(Photo by Brett Jordan on Unsplash)

Instead of putting my energies into dealing with the side effects of treatment, I went down a dark hole.

Language matters! While there’s no doubt that cancer brings on stress and anxiety, terminology can make a difference in your cancer experience and that can either help or hinder you in the process.

So I urge you to consider the words you use to refer to yourself and pay extra attention to how that feels to you. You could be making yourself miserable without even realizing that you have some control over this.

Don’t Take Stress Sitting Down

About a year or so before I felt a cancerous lump in my breast, I was tasked with planning an academic conference, which I’d never done before. The project was running behind schedule, procedures had changed and I felt panicky and lost.

As a result, I was working seven days a week with most workdays lasting into the night. This was in addition to having to break in the early afternoon to pick up my children from school, then continuing work from home.

Everything was a rush and I had a constant lightheaded feeling.

When you have the least time to move is when you need to move the most!
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Most non-work activities fell by the wayside (Cooking? Cleaning? What’s that?). But the most pivotal of these was exercise. I’d been through highly stressful situations before but always had the opportunity to work off my anxiety. This time there was none of that.

Anxiety sat like a boulder in my stomach. I could feel my brain buzzing from the stress but couldn’t do anything about it. There was SO MUCH to take care of that my work-life balance was non-existent. There was only work, and this went on for weeks. My mental well-being plummeted, sleep was filled with night sweats…and the agony of not having the time to work out magnified my anxiety.

We know how bad sitting is for you physically, but not everyone is aware of the psychological ramifications of being sedentary, especially when it comes to managing stress. I found it so ironic that after my tumor was confirmed, the doctors estimated that it had started developing a year or so prior…during the time that I felt my life falling apart.

Stress did not cause my tumor. But it didn’t help my body counter it either.

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I personally am convinced that there’s no healthier, more positive way to tame anxiety than exercise. COVID’s remote work situation demonstrated to me that I feel much saner when I can stick a workout into the middle of my day, even if it lengthens my workday a bit, and the increased blood flow helps with my mood and productivity.

There is a Zen saying: “If you don’t have time to meditate for an hour everyday, you should meditate for two hours.” I believe that this saying also holds true if you substitute the word “exercise” for “meditate”.

Find movement that you enjoy and then stick it into your day.
Photo by Ahmad Odeh on Unsplash

Obviously, I’m not suggesting that you do either for two hours. The idea is that when you are overwhelmed with responsibilities and stress, that is an indication that you need meditation AND exercise all the more.

Frankly, it’s also time to reevaluate your life priorities, but that can be difficult.

How to get more movement into your day? Based on the research* that I’ve seen, it’s best to take breaks about every half hour. That might seem impossible for some people and some work situations, but do the best you can. The last thing you need is more pressure on yourself.

Even just standing up and stretching is better than sitting glued to your seat. If you can walk around, take the long way to the bathroom. Hike up and down the stairs. Breathe deeply. Start there and you can add more later, keeping in mind that energy begets energy: the less you move, the harder it will be to get started; the more you move, the easier.

If you have time for a considerably longer break and don’t yet have an established training program, start by picking a rhythmic movement like walking, running, cycling or swimming and lose yourself in the rocking motion. Not only does that give you exercise, but the gentle back-and-forth is soothing for the nervous system.

Most importantly, make the experience a positive one.

My personal recipe for mind-happy exercise is: (1) indoor rowing (for the rhythm and cardio load), (2) strength training (with a focus on each repetition) and of course (3) yoga (for deep breathing and unwinding the stressed-out body). But these recipes will vary for every individual. What’s yours?

*I had a choice between getting my workout and meditation in or digging up these references. Guess which I chose? 😉 I’ll be back with the science in another post.

Invisible Effects: Anxiety

This is tough to write.

One of the reasons this blog is currently anonymous is that there are topics I want to cover without the fear of being judged. As many strides as have been made in dealing with mental health issues, there still remains a stigma associated with things going on in your headspace.

If there’s one thing that cancer did, for better or for worse, is force me to face the fact that I have a problem with anxiety. I’ve often wondered how different my cancer experience would have been, had I been able to go through all of this without the uncontrollable fear. I expect that I would have been less angry, less nauseated, less desperate. I’m sure that other people experience anxiety with their diagnosis too; mine devoured me.

This deserves a description: if asked to describe myself as a dog breed, I would like to say that I’m a Great Dane or a Mastiff (hopefully less drooly), watching the world coolly, not getting too excited about anything. But that’s not who I am. I’m a Chihuahua — but not a nasty, bitey, snarly guy with a Napoleon complex. I’m one of those pathetic little dogs that just sits there and trembles with a paw raised. I get anxious, and how. But in the past, the bouts of anxiety always passed rather quickly, perhaps in a matter of hours or, at worst, a day or two. My mind would work through it, and that would ease the tension. That’s why I’ve always been able to handle it.

But going through cancer blew that to pieces. When I experience anxiety now, it hits me like a freight train. The effects are immediate: a cold punch to my gut followed by nausea and weakness. When I focus on being mindful and present, I can slow my breathing and heartrate but I cannot get rid of the nausea, so I can’t shed the overall feeling.

This sensation is horrible. Meditation works wonders, but I cannot yet make enough space for my anxiety to be able to step back and observe it. It’s in my face, and that’s terrifying, but not necessarily apparent to those around me. It’s a dirty little secret that has affected my quality of life.

That can be harder to deal with than cancer. And I can’t believe that I let myself write that. But apparently, I’m not the only one who feels that way. Dr. Stephen Ilardi, Associate Professor of Psychology at the University of Kansas with a private practice in Clinical Psychology, teaches a Calm Master Class called “Rethinking Depression” (Calm.com) in which he describes the experience of a former cancer patient who battled Hodgkin’s lymphoma. While undergoing particularly difficult cancer treatment, the patient was visibly ill and suffering but received an enormous amount of support from those around him, and that helped him through the disease.

Several years after he recovered from his cancer, the young man experienced a bout of serious clinical depression, but he didn’t “look sick” the way he had from the lymphoma. As a result few people around him understood the level of psychological pain he endured, and he received little support.

After his depression finally lifted, the patient declared that if he had to chose between once again going through the cancer or experiencing depression, he would take the cancer even though its treatment was pure physical torment.

That speaks volumes regarding not only the agony of psychological distress but also how critically important it is to take it seriously. Mental health issues deserve more attention, and even though we’ve come a long way in understanding their impact, we need to do better. In the context of cancer, I feel it’s imperative to address the psychological repercussions of the disease, in addition to the life-threatening physical ones.

Which is why I’m writing. I can’t help but think how much worse this would be if I wasn’t actively engaged in coping techniques.

Treating the Whole Patient

Falling ill in the 1960s, my grandmother was never told by her doctors that she had pancreatic cancer. That seemed to be a fairly common tact when the outcome was bleak: there was no question the end was coming once you got a diagnosis, so why stress the patient even more?

And survivorship? What was that? Surviving was a long shot and anyone who did make it through was told to be happy that they were still alive. Lingering side effects were considered a small price to pay. But with the advent of more effective treatments, the population of survivors has grown significantly. These days, there is a future for cancer patients, and with that a growing need to address the distresses that may plague former patients for many years to come.

There are the physical repercussions that we often hear about, such as neuropathy, lymphedema and heart troubles. But more attention needs to be paid to what goes on in the space between patients’ ears. The psychological effects of cancer diagnosis and treatment can be just as, if not more, debilitating and long-lasting.

It’s the pain no one else sees that hurts the most.

I am fortunate to live in an area of the United States with exceptional medical care and several highly reputable cancer centers. However, I’m even luckier that the particular hospital system my family is part of has gone to great lengths to make sure that they treat the whole patient, offering outstanding psychological support at the cancer center. Not only are there support groups and a variety of classes, but there are exceptional clinical counselors available to deal specifically with mental health issues associated with cancer. Based on what I’ve been told by patients at other facilities, such an enhanced level of emotional support is a rarity.

This is disappointing. We have finally chipped away at the stigma surrounding cancer and have improved the survival rate, but we have much more to do to support patients and survivors in treating the emotional effects of the disease.