COVID-19: What Your Friends with Pre-Existing Conditions Need You to Know

8 Oct 2020 advice, corona virus, COVID-19, Partners, suggestions, Type 1 Diabetes, Type 2 Diabetes

This content originally appeared on Beyond Type 1. Republished with permission.

By Lala Jackson

The first few months of 2020 presented a global health crisis not seen in almost a century. When the coronavirus first emerged, wild theories abounded. We didn’t know who was most at risk to get severely ill or die. There was a mind-numbing amount of conflicting information – do we wear masks or not? Is this virus airborne or does it live on surfaces? Am I safe to go outside at all?

For those of us living with chronic diseases like diabetes, this was all exponentially more intense. Living with an invisible illness during a pandemic is a uniquely anxiety-inducing and isolating experience. Each of us has our own level of fear about our risk, but much of our ability to protect ourselves was based on pure gut feelings because no one had enough data from which to make informed decisions.

Now, we know a little bit more. Living with diabetes itself does not appear to increase our risk of contracting coronavirus, but if we do get COVID-19 and end up in the hospital, things could go south quickly. It also seems like many people who do end up in the hospital have other underlying heart or lung conditions or are older in age, so we don’t know what percentage of risk is diabetes-specific. For many of us, memories of poor diabetes care in hospital settings is a major risk to consider – COVID-19 may not kill us but a medical professional who doesn’t listen to or know how to take care of our needs might. And it may not even be their fault – in an overly taxed medical system that does not have the resources to take care of the volume of people who are sick right now, people with often-misunderstood chronic illnesses fall to the wayside.

Existing in the world with a disease like diabetes can already be already dangerous. Existing in a world currently going through a pandemic, with conflicting and limited guidance and leadership, broken healthcare systems, a taxed medical supply chain, and the medication that is our lifeline often too expensive to afford? It’s all still scary, and while we know a little bit more, we’re still flying blind and doing the best we can amidst constantly changing circumstances. Here’s some of what your friends with pre-existing conditions want you to know:

  1. This is still really scary; please give me space and time to figure out what decisions are best for me. Every person living with a pre-existing condition is different. Many of us live with multiple health hurdles we’re juggling, and even within the same disease, we each have to take care of ourselves in different ways. Some of us feel completely safe starting to return to (socially-distanced, while wearing a mask) everyday activities, while some of us feel safer continuing to stay at home. Some of us don’t have a choice — the need to earn a paycheck to support ourselves, our families, or keep our health insurance supersedes our fears. Be kind. Be patient. Don’t assume to know what we need. Ask us how you can support us.
  2. Please stop sending me articles about people with my disease dying from COVID-19. I’ve either already seen it or I’m purposely ignoring it for mental health reasons. I promise I already know all of the risks someone like me faces, and I am doing everything I can to mitigate them. It is my job to pay attention to the level my health requires, and I promise I’ve already done it.
  3. I reserve the right to change my mind at any time for any reason. In a time when we are all making decisions on the fly, there are days we’re agreeing to things because the most recent headline we saw seemed positive, or we’re having a strong mental health day. At any moment, for any reason, that may change. New studies about how COVID-19 affects people are published weekly, with studies that then directly conflict following just a week later. We’re not being flaky; we’re trying to keep ourselves alive in a constantly changing landscape.
  4. “Don’t worry, it only kills people who are old or already sick” is still a really horrible thing to hear. Knowing that there are so many people in the world who care so little about our lives is heavy. For many of us, this is simultaneously compounded by how society views our race, our culture, our social standing, our access to healthcare or a paycheck. We are being told we do not matter from multiple directions, and we are exhausted.
  5. Having a discussion about a COVID-19 vaccine isn’t productive for me. While there are many companies doing clinical trials, there is no current frontrunner. Once there is, there will be conversations about priority vaccinations. No, I don’t know if I will be able to get one. Don’t ask me about how I feel about vaccinations and what I will do once I get one or if I should get one. There are still many unanswered questions about what will happen after a vaccine becomes available and I’m just trying to stay safe until then.
  6. I still love you. But if I say I can’t visit with you yet, please respect that. I miss you immensely. I wish I could see you. Right now, I’m having to weigh the very real thought that if we visit together right now, there’s a chance I won’t be around to know you for the rest of your life. I don’t want to have to make that decision. Please don’t ask me to.
  7. Please stay home while waiting for your COVID-19 test results or if you’re feeling under the weather. This may not feel like a big deal to you. You may not feel like COVID-19 will impact you too harshly or you probably won’t end up interacting with anyone who is high risk when you go outside. But there’s no way to know who’s path you’ll cross and what impact COVID-19 could have on them or someone they are going home to. Many of us who are at higher risk do not have the option of staying inside and away from you. We have to get groceries for our families, we have to earn a paycheck, we have to see our doctor, and many of us don’t look sick. You won’t know when you cross paths with a high-risk person. Please don’t make those choices potentially deadly for us.

To learn more about the precautions everyone impacted by diabetes should take throughout the COVID-19 pandemic, visit coronavirusdiabetes.org.

Source: diabetesdaily.com

Food Shaming: Changing How We Talk About Food

15 Feb 2020 advice, diabetes burnout, feelings, Food, food choices, food shaming, Life with Diabetes, lifestyle changes, Partners, rude comments about diabetes, Type 1 Diabetes, Type 2 Diabetes

This content originally appeared here. Republished with permission.

By Brenda Manzanarez, MS, RD, and Cynthia Muñoz, Ph.D., MPH

You know you shouldn’t be eating that kind of stuff, right?

If you’d just eat better, you wouldn’t have to take so many medications.

I know someone who cut out all carbs and cured their diabetes; have you tried that?

Do any of these comments sound familiar? Maybe someone else has said them to you, maybe you’ve said them to someone, or maybe you’ve thought them about yourself. Either way, comments like this, even if they have good intentions, often come off as judgmental and shaming. This type of “advice” can cause confusion, anxiety, frustration, and an unhealthy relationship with food.

Our Relationship with Food

Food is important when it comes to keeping blood sugar in range, but managing diabetes is not just about glycemic control—we also need to juggle lifestyles, health goals, and mental health.

There are so many factors that influence our food choices, and you cannot see those factors by just glancing at a plate. Food is an important part of our lives, and it can have so many meanings to different people. It can mean health, love, sense of community, or pleasure, but for others, especially people with diabetes, it might cause feelings of anxiety and fear.

Changing the way you eat is a major lifestyle change, and major lifestyle changes always take time.

While you are on this journey, unsolicited advice from strangers and even loved ones can feel more like judgment and might cause you to question yourself or feel guilty about your own choices.

Changing the way you eat is a major lifestyle change, and major lifestyle changes always take time. There are a lot of things to juggle when managing diabetes, so be patient with yourself and with others.

Unintended Consequences

Food shaming often happens when someone’s own preferences and opinions don’t line up with others’. Judgmental comments like “you shouldn’t eat that” may be a projection of their own frustrations or a reflection of their misconceptions about diabetes.

As clinicians who work with children, teens, and young adults with diabetes and obesity, we know that talking about food can be very difficult. We also know that negative comments, pictures, and memes on social media can have a harmful impact on someone’s emotional well-being, especially people with diabetes.

No one should be shamed about their food choices.

No one should be shamed about their food choices. Shame leads to negative feelings about food, which can lead to anxiety, depression, and even disordered eating. And these conditions can cause more damage to physical health than poor diet.

Rethink the Role of Food and Your Health

Instead of thinking of food as “good” or “bad,” or judging people (or yourself) by the way you eat, picture food and eating as being neutral and adopt a non-judgmental way of thinking. The food you put on your plate, is just food that will provide energy and nutrients to fuel your body.

Unlearning what we have been exposed to takes time but being aware of those negative thoughts is a start.

Instead of thinking of food as “good” or “bad,” picture food and eating as being neutral.

Remind yourself that there is no one right way to eat with diabetes— it has to be tailored to your own unique needs— like your budget, taste preferences/favorite foods, cultural norms, cooking skill, time, etc. And you don’t have to feel guilty about enjoying a treat every now and then.

Break the cycle and be nice to yourself and to others. Instead of criticizing people, ask them how they feel about the changes they’ve made and have them decide how they feel about it. If appropriate, provide encouragement.

If you are concerned about a loved one, privately ask how they are doing, and don’t offer advice unless they ask for it. Ask if there is anything you can do to support them, and/or seek information about healthy food choices and incorporate this in your own life as a form of support for your loved one.

If you feel this is a big issue in your own life, don’t be afraid to seek out help—talk to your primary doctor or with a therapist. If you don’t have a therapist ask for a referral from your doctor. To find a mental health provider with knowledge about diabetes, check this directory.

Bottom Line

Food is meant to be nourishment for our bodies and to be enjoyed; find a balance that works for your health, be confident in your choices, and be accepting of other people’s choices.

If you find yourself wanting to criticize someone else’s food choices or appearance, don’t! This is generally not helpful and can have a negative emotional impact.

A neutral and non-judgmental way of thinking is best when talking about food and diabetes; there are no “good” and “bad” foods. The key is to balance what you eat to get the nutrients you need.

If you receive a negative comment from a stranger on social media or in person, remember that person doesn’t know you and how you take care of yourself. Don’t beat yourself up and continue to focus on ways to be the healthiest version of yourself.

Source: diabetesdaily.com

My Dos and Don’ts for People Without Diabetes

13 Feb 2020 advice, exercise, insulin, insulin pumps, Intensive management, mindfulness, Partners, Type 1 Diabetes, Type 2 Diabetes

This content originally appeared on Beyond Type 1. Republished with permission.

By Erika Szumel

Managing type 1 diabetes (T1D) means insulin calculations, getting plenty of exercise, and making strategic meal plans. But it also means awkward moments, unnecessary advice, and lots of looks from people who don’t live with diabetes.

While we might be well-equipped to take care of our disease, we aren’t always ready for these awkward moments with strangers, friends, and family who might not understand what we live with.

Here are the dos and don’ts of diabetes etiquette for those without diabetes, written by a T1D.

Do Ask Questions.

If you’re speaking to someone with type 1 diabetes, ask questions about the condition. I believe that 9 times out of 10, when the question is asked kindly, that the T1D will be happy to answer you. At the end of the day, we’d rather you understand better than continue to walk around with misconceptions.

Don’t Ask Loaded Questions.

Is it the bad type?
So you just have to watch your diet, right?
Did you eat too much sugar as a kid?

When people with T1D hear questions like this, it can be enlightening and frustrating at the same time. Enlightening because I am surprised to hear people still make these assumptions or have these ideas. Frustrating because these people still make these assumptions or have these ideas. Try phrasing a question like, “Can I ask you something so I understand type 1 more clearly?” or “Do you mind telling me more about it?”

Do Be Supportive.

What does being supportive really mean to you? For someone with type 1 Diabetes, it’s nice to know that others sort of understand what’s going on and that they are willing to help if needed. This could simply mean checking in on your friend or helping them find a snack when they are low. Showing your support displays itself in various ways.

Don’t Tell Us Horror Stories About Your Relatives.

The general public tends to have the idea that telling someone with T1D about your grandfather who lost his foot because of diabetes is, I don’t know, helpful? Most patients diagnosed with T1D are aware of the possibility of complications and their effects on the body caused by T1D. Please do not feel like it is your duty to remind us of the things that can happen to us (or may have already started) when you don’t know! Bring this into the conversation if the person with T1D has started talking about it or asks you a question.

Do Help Us Be Prepared for Lows.

Whether you’re a spouse, friend, or coworker, helping us be prepared for lows is such a kind gesture. That simply means knowing where snacks or low treatments are in the home or office and helping us get them when we need them.

Don’t Shrug Us off Simply Because What’s Happening Is Invisible.

Type 1 diabetes is an autoimmune disease that can have some serious consequences. The scary part: it’s mostly invisible. Other than my insulin pump and continuous glucose monitor (CGM) and their respective sites, you cannot tell that people with T1D are any different than you – with the exception of seeing us test our blood sugar or give a manual injection with a syringe or insulin pen.

I think one of the worst feelings I encounter having this condition is feeling like it means nothing to those around me – and this is usually solely because of ignorance or lack of understanding. Please don’t shrug it off as the “take insulin, watch what you eat” disease, because it is so much more complex. Be mindful of those with T1D, and be willing to offer a helping hand if they need something.

Do Help Us Stop the Stigma.

If you’ve been around a T1D for some time and have learned enough about it, then help us stop the stigma. When you hear comments or jokes about it, do your best to raise awareness for what is true about this condition.

Don’t Ignore the Jokes.

I think a huge part of raising awareness for type 1 diabetes is simply stopping jokes and memes dead in their tracks. I think people will remember when you stop them in that moment and say “Hey, that actually isn’t how it works” or “It’s actually a lot more serious than that.”

At the end of the day, there are a few things you should and shouldn’t do as a good friend, partner, or stranger to the millions of people affected worldwide by type 1 diabetes. Hopefully, this list will help you do just that.

Source: diabetesdaily.com

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