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Surviving Illness

Tips for Patients, Family, Friends, and Coworkers

A patient once told me, “Illness is a way to health.” This is a simple but profound concept. We have many responses and approaches to illness and health. Some of us use denial in order to cope. Others respond by feeling scared or overwhelmed. Anger and resentment are common reactions.

I handle illness by acting tough and invincible. I wish I saw illness as an opportunity for growth, but I rarely do until I am on the recovering side of a medical event. It is a lot easier to have a positive attitude when you are getting well rather than feeling crummy.

There are inherent strengths and weaknesses in all of these coping mechanisms. These approaches all work to some degree, but there are limits to them. Being strong is fine when we feel strong, but what about those times when we aren’t strong? Denial can be effective in the short run, but is difficult to maintain when symptoms cannot be ignored. As for always trying to look at the brighter side, it can feel like a failure on those days when we can’t see anything positive.

Coping mechanisms serve a purpose; they can help us survive. But sometimes coping measures lose effectiveness and become a burden. Moreover, chronic illness can be exhausting. Maintaining a role while feeling sick consumes a lot of energy—energy better spent on healing. This is true for patients as well as for those in the patients’ lives.

Here are some tips for patients, family, friends, and coworkers on how to survive being sick:

Patients: Allow others to help you. Ask for help, even for things you know you can do for yourself. Accepting the kindness of others is a brave and generous act. Be clear about what you need.

Caregivers: Respect the patient’s autonomy and boundaries. Ask if there are ways in which you can help.  Be clear about what you can or cannot give. Do not give more than what is asked for or do more than a patient wants.

Patients and Caregivers: Find support. This is important whether you are a patient or a caregiver. Support groups can provide valuable information and insight. Some support groups are open to families and friends of patients.

Listen – really listen. Never assume that people act the same way in all situations. People act in a variety of ways when it comes to being cared for or in offering care to others.

Be respectful of self and others.  Do not negate or discount the feelings of another.

Be honest, but compassionate. Be authentic; do not try to force yourself to be anything other than what you are. Talk about the illness and how it impacts you. Feel free to not talk about the illness. It is perfectly appropriate to talk about the ordinary side of life. Sitting in silence is a lovely way to be with people.

Keep life simple. Let go of perfection. Perfectionism can be harmful, for the healthy as well as those with chronic health issues. There are many paths to health. This is not a test and you cannot fail. It is acceptable to cry, be angry, to feel alone, or to feel numb. It is also appropriate to laugh. Just remember, whether you are a patient or part of the patient’s community, you do not have to do this alone.

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Healthcare

Summer can be hell for people with chronic illnesses

How’s your summer going? Is it a carefree time, filled with picnics, vacations, and long evenings spent outside? Oh I hope that you get to enjoy some or all of the loveliness of summer.

Summer can be hell for people with chronic illnesses. Heat can make it difficult to be outside, adding extra discomfort when going to doctor’s appointments. Sleep can be harder to come by if you are trapped in a hot environment, unable to afford air conditioning or other cooling device.

Some of us yearn for those summers of our youth, the lazy days of sleeping late, hanging out with friends, swimming, and balancing having fun while trying to stay out of trouble. That yearning can be intense if you face illness, medical appointments, and mounting bills.

My summer has been marred by the Senate’s attempt to repeal the Affordable Care Act (ACA aka Obamacare). I assume it is adding an extra level of stress to others who rely on the ACA. Recently, various news sources reported that the nonpartisan U.S. Congressional Budget Office revealed that 32 million Americans would lose their health insurance by 2026 if Obama’s ACA is repealed without a replacement. Can you imagine life without healthcare coverage? Can you imagine facing cancer, mental illness, diabetes, pain, or any of the many other health conditions that are so common in the U.S.?

Even if you feel secure in your healthcare, you will be affected if 32 million American lose their coverage. Medical costs will rise for everyone. Some hospitals and medical practices will close, Unemployment will increase.

Although attempts to repeal or to repeal and replace the ACA have been stalled, there will be future attempts. Please don’t stand by and do nothing. You can make a difference by calling your senators and expressing your opinion. Ask them to leave the ACA alone. If your Senator or Congressperson voted against any attempts to repeal or reduce the ACA, please thank them. Many of them are back home in their districts, so this is a good time to contact them.

Holocaust survivor and Nobel Laureate Elie Wiesel said, “What hurts the victim most is not the cruelty of the oppressor, but the silence of the bystander.” Don’t be silent. Contact your senators at www.senate.gov. Call, write, email, tweet, and visit. Do this today, and your summer may be a bit more pleasurable just because you helped to make a difference.

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hepatitis

How can healthcare and hepatitis compete with Beyoncé and Trump’s tweets for social media attention?

Tomorrow is World Hepatitis Day. The World Hepatitis Alliance has organized a major campaign in order to raise awareness and influence real change in disease prevention and access to testing and treatment. There are many wonderful ways to participate, and I urge you to get involved by clicking on this link.

However, I must admit feeling discouraged by the lack of attention that hepatitis and health care receive. I read recently that Nevada teen, Carter Wilkinson set a record of the most retweeted Twitter message, attempting to get a year of free chicken nuggets from Wendy’s. On May 10, he surpassed three and half million. His noteworthy tweet was, HELP ME PLEASE. A MAN NEEDS HIS NUGGS.

Yes, “HELP ME PLEASE. A MAN NEEDS HIS NUGGS,” is what generated attention. Here are tweets that will likely pass unnoticed:

  • HELP ME PLEASE. PEOPLE NEED LIVERS.
  • HELP ME PLEASE. PEOPLE NEED HEALTHCARE.
  • HELP ME PLEASE. MORE PEOPLE DYING FROM HEPATITIS C THAN ALL 60 INFECTIOUS DISEASES.

Nope, Wendy’s chicken nuggets takes the prize. How can health care and hepatitis compete with Beyoncé and Trump’s tweets for social media attention? I don’t know, but a good place to begin is by visiting the World Hepatitis Day website. You can:

What would you tweet if you wanted to increase awareness about hepatitis or health?

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truth

In no place do facts matter more than when it comes to our health.

We live in tense times. It seems like we are fighting for truth. In no place do facts matter more than when it comes to our health. What is true, and what isn’t? How can ordinary people trust their sources?

I wrote about this recently on my other blog (www.hepmag.com). False headlines appeared in the Guardian stating, “ ‘Miracle’ hepatitis C drugs costing £30k per patient ‘may have no clinical effect’.” The Guardian wrote, “Drugs that have been hailed as a cure for a debilitating and sometimes fatal liver disease – but have threatened to break the health budgets of most countries because of their cost – have not been proven to have any effect, according to a new review.”

The review the Guardian was referring to, was a report issued by the Cochrane group. For those who aren’t familiar with Cochrane, this collaboration tries to provide bias-free evidence. I am not sure that bias can be completely eliminated, but Cochrane’s goals are admirable. So a review from Cochrane stating that hepatitis C treatment may have no clinical effect is deeply disturbing.

It was nonsense. However, even if news is set straight, headlines often do more damage than good. This is because it is hard to make bad news go away. For example take the false connection between autism and vaccines.  In 1998, Andrew Wakefield, MD published a study in The Lancet suggesting that the measles, mumps, and rubella (MMR) vaccine could trigger autism. It turns out that Wakefield’s data was fabricated. The Lancet eventually retracted the paper and Wakefield lost his medical license.

But the damage was done, and people continue to believe there is a link between autism and vaccines, despite numerous studies showing that they don’t. Vaccines save lives and they are covered by health insurance. Despite this, vaccination rates are still lower than what they need to be to protect us from preventable diseases.

Good luck getting people to change their minds. There are a number of theories, based on various experiments. It may just be that we have a hard time changing our minds. One experiment found that the act of trying to correct misinformation made us more likely to believe the false news rather than the correct version.

Back to my questions, “What is true, and what isn’t? How can ordinary people trust their sources?” Don’t rely on news headlines for your medical and scientific information. In general, reliable scientific journals have been peer-reviewed. However, this would not have protected us from the false autism research. For that, it’s best to have an open mind. If you hear something that contradicts your belief, go to the source. You may learn that you were mistaken, but you may also learn that you are open-minded, and that is a wonderful thing to be.

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cancer prevention

I lost both my parents to cancer, a disease that is often preventable.

I lost both my parents to cancer. When they were each diagnosed, they both said, “How can that be? Cancer doesn’t run in our family.” To which I said, “That is because everyone in the family died young from heart disease. No one lived long enough to get cancer.”

What I also could have said is that one in two men are diagnosed with cancer; one in four die from it. The cancer diagnosis rate for women is one in three, with one in five succumbing to it. That is a huge risk; enough to make me take those articles on how to reduce my cancer risk seriously. Or maybe write one, which is exactly what I am doing now.

The lists are simple. You may have seen them so often that you ignore them, but maybe today is the day you decide to do something different. Here are common tips:

  • Moderate exercise. Aim for an hour every day.
  • Avoid all tobacco products
  • Don’t drink alcohol. If you do, limit your drinking to one standard size drink per day for women; two standard size drinks per day for men.
  • Avoid the sun and protect your skin from the sun.
  • Eat a healthy, high-fiber diet filled with vegetables, fruit, and lean sources of protein.
  • Maintain a healthy weight.
  • Avoid excess radiation exposure.
  • See your medical provider regularly and be sure to follow through on all recommended cancer screening tests.

None of the tips on the cancer prevention list will hurt me. If I get cancer, I don’t want it to be because I ignored the list. I want it to be because of bad luck or genetic factors. I can handle life throwing me curve balls better than I can handle my own failure to take better care of myself, and thus reduce my cancer risk.

For more information, visit the National Cancer Institute and the American Cancer Society.

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It’s the Food

food

I enjoy a quarter of an avocado as much as I do a half.

My stomach is grumbling. Right about now is when I start foraging for “a little something.” However, this year I traveled a lot, and added a few pounds as a result. I am trying to cut back, and although my snacks are usually healthy, they aren’t necessary.

I could increase my exercise, but although being active is great, it won’t help me lose weight. Studies repeatedly show that exercise alone is not an effective way to lose weight. The human body adjusts to increased activity, and we end up burning the same daily total of calories.

The saying, “You can’t outrun a bad diet,” is true. When it comes to weight loss, it’s all about the food.

The best explanation for this concept was in The Exercise Paradox by Herman Pontzer Scientific American February 2017 (www.scientificamerican.com/article/the-exercise-paradox). As I read the article, I found my lazy-self cheering, “No more Fitbit or trips to the gym.” Wrong. Exercise is critical, even if it won’t trim my waistline. The benefits of exercise are seemingly endless. It reduces our risk of multiple diseases, improves sleep and circulation, lowers inflammation, and improves our moods. Exercise is essential to good health.

Back to the food. In my case, it may be about eating too much of it. I love rich avocados and fresh fruit, but if I am going to fit into my wardrobe again, I will have to cut back. I enjoy a quarter of an avocado as much as I do a half. Eating less has the added benefit of saving money. Have you seen the cost of avocados? I thought I would have to take out a small loan to afford them.

Naturally, I wondered if the problem was what I was eating, rather than the amount. I can list a litany of diets, but I am sure you’ve heard them. But scientists haven’t found a diet that works for everyone.  Weight loss and gain may be affected by genetically differences. Some people do better on Paleo diets while others fare well on vegan diets. Everyone does well if they eat less. Melinda Irwin from the Yale School of Public Health said, “A person can eat almost anything if the portion size is appropriate.”

The trick is finding a diet you can stick to. The bottom line is to avoid being too hungry, as that will test our resolve. So, on that note, I am going to make a cup of tea and think about fitting back into my clothes.

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