Dear fellow traveler!
As a physician I am expected to know all about symptoms. However, I have found myself having difficulty describing my own symptoms this week. And even though I have very supportive healthcare providers, this made me feel a bit inadequate. Why I would feel this way? I have been thinking it over for a bit, and even explored a little online, but did not find too much written about this topic. My husband told me that I ended up asking my provider several times “does this make sense to you”? (which I discovered is one of the recommended tips when describing symptoms to doctors) and now I am wondering, dear reader, do I still make sense to you? I have given this topic a place within my heart and head and hope that my writing may comfort you.
We see the world and we sense our bodies in our own unique ways, colored by our genes (nature) and our past (nurture). It is not always easy to translate our feelings into words. There is even a formal name for it: alexithymia. Some of us may experience this difficulty expressing ourselves more often and more deeply than others. Many factors contribute to this challenge, such as:
- brain function
- pain thresholds
- vocabulary (I never know how to answer a question about the character of my pain – dull, burning, sharp?)
- self-awareness (which may be affected by traumatic experiences)
I think there may be an extra layer of complexity to this. What if your body has been damaged or altered by your disease or treatments? I can imagine that altered anatomy, myofascial planes, blood supply, lymph drainage, and nerve routes, may change the ‘normal’ (if there ever is any) or expected presentation of a symptom. These physical transformations may further challenge the often already difficult communication about symptoms between the provider and the patient, making illness harder to diagnose and treat.
It can be daunting for a patient to know when a chronic symptom has worsened to the point of needing to seek help. If you wait too long, your illness may become more severe. Also, you may find that you’re unable to explain when and how the symptoms started changing (over the course of days/weeks/months?) or how exactly this presentation is different from before. If you seek help too early, you may worry that you’ll earn the reputation of “the boy who cries wolf“.
Physical and emotional symptoms can coexist, interact, and synergize with each other. You may be upset about the effect a symptom may have on your life, as well as be wondering why it is happening (Is it a sign of the cancer recurrence?) and will it ever go away? But then, stressing over it will not help your body either.
Symptoms may not always have associated objective findings on diagnostic testing. And even if they do, how do we know for sure they are related and not a coincidental finding? The description of invisible symptoms is not unique to cancer, as described by this Multiple Sclerosis blogger.
Take home points:
- Find yourself a provider who actively listens and treats you with respect.
- Ensure that life-threatening problems will not be not missed, while your emotional toll is not being ignored.
- Be accepting of your new reality. Accept that your body may be irreparably damaged and your situation may be chronic.
- If a therapeutic intervention is being proposed, carefully balance the pros/cons (high potential to help coupled with a low risk to do harm).
- Be aware that there are a lot of expensive and time-consuming scams out there that prey on people who are rather desperate for relief. To me this is cruel beyond words.
- Learn to balance uncertainty (as to etiology/prognosis) with the hope that there might be options out there to take the edge off and make your symptom(s) a bit more bearable.
I hope this blog entry will allow you to 1) feel that you are not alone in this experience and 2) be empowered to go out there and find yourself a personalized treatment plan! Continue to be kind to yourself and others!
Thank you for visiting me. Below I’ve included a few things to educate and entertain you. And I share ‘extra treats’ via social media!
Learn and Think:
Even though the cause/effect relationship is not confirmed yet, a recent publication has revealed a (not very surprising?!) association between more frequent vacationing and a reduced metabolic syndrome risk. Metabolic syndrome is associated with the risk for heart disease and likely many other diseases, including some cancers. Try to utilize all your available vacation time!
Metabolic syndrome is a collection of risk factors for cardiovascular disease. If you have more of them you are at higher risk of cardiovascular disease. This is important because we are actually seeing a reduction in the risk for cardiovascular disease the more vacationing a person does. Because metabolic symptoms are modifiable, it means they can change or be eliminated. Bottom line: A person can reduce their metabolic symptoms – and therefore their risk of cardiovascular disease – simply by going on vacation. We are still learning what it is about vacations that make them beneficial for heart health, but at this point, what we do know that it is important for people to use the vacation time that is available to them. “One of the important takeaways is that vacation time is available to nearly 80 percent of full-time employees, but fewer than half utilize all the time available to them. Our research suggests that if people use more of this benefit, one that’s already available to them, it would translate into a tangible health benefit.Source
Live and Feel:
- Enjoy watching these shore birds….!
- In theme with last week’s topic of guilt, one of Taylor Swift’s new songs has been released: “Soon You’ll Get Better (because you have to, but I hate to make it all about me)!” she sings. It has been released at a time when her mother has been diagnosed with a cancer recurrence. A few quotes of her television interview have been pasted below:
“It’s taught me that there are real problems and then there’s everything else. My mom’s cancer is a real problem. I used to be so anxious about daily ups and downs. I give all of my worry, stress, and prayers to real problems now. It’s really interesting because I don’t think I have written a song quite like that before. And it’s just sort of, like, it’s just a tough one. It’s just not something that we deal with until we have to, until we see it, until we experience it, until someone close to us is going through something like that. And so, writing about it was really emotional. And I’m just gonna stop talking about it now.Source CBS News and Source Today
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