Pursuing Closure - LFH Issue 2025 Vol. 23

Pursuing Closure - LFH Issue 2025 Vol. 23

Written by: Dr. Gary, McClain - justgotdiagnosed.com

I spend a lot of time talking with clients about closure. Most likely, that word has come up for you, too. Of course, when we think of closure, we talk about life events, such as a parent learning their child has a bleeding disorder and suddenly confused about the future and wanting answers to the “why us” questions, a man living with a bleeding disorder suddenly losing his job and not having answers on what caused his layoff, or parents learning their trusted physician is leaving the practice and not having a chance to say goodbye and ask for her contact information. But I also think about closure in the daily encounters with other people, like forgetting to say

thank you when someone has done an act of kindness, or feeling ignored or snapped at and sitting with angry feelings, and feeling guilty or frustrated over that loose end that you want to tie up. What is closure? I think of closure in this way. As humans, we don’t like these loose ends that are often left dangling in our minds. Like during times of loss and grief, and when we experience other breakdowns in communication. We want to understand, to know why, and to feel understood. We want to get things back to an even playing field (or to get even).

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Can’t I Get Some Closure?

As I talk with my clients about their losses and disappointments in life, they often talk with me about wanting some kind of closure. They describe closure in the form of finally saying what they need to say, knowing what they need to know, being fed up enough to walk away, being treated the way they deserve. Finally. It is really difficult to sit with communication that feels incomplete. Especially when deep emotional pain results. The pain can feel overwhelming, accompanied by feelings like disappointment, anger, fear, shame, resentment, and other emotions. And so it is only human to ask yourself: Can finding closure make the feelings go away? The best way to achieve closure can be summarized as process that begins with sitting down with yourself, followed by having a conversation. Here are the steps:

Define for yourself what closure means.

Closure is a relatively general term. What are you looking for?

Do you just want to hear that you were important to that person and that you will be missed?

Taking the time to sit down with yourself and define exactly what closure means in this situation will help you to come to terms with why you are feeling such difficult emotions.

Consider if closure is realistic the way you have defined it.

People can only do what they can do. Everybody has limitations. Life happens around us, and to us, and we may never have answers to the question of why. Sometimes we make decisions that we can’t explain, as do other people. The person we want closure from may be constrained by rules and guidelines, like in the workplace. Or professional boundaries may guide what is appropriate or allowable.

Weigh the risks of further exposure to the situation or the person.

Are you sure your closure meeting might make you feel worse instead of better? And lead to more feelings of unfinished business and lack of closure? Don’t let this turn into an endless cycle leading nowhere, risking further unhappiness for yourself. Demanding answers to unanswerable questions leaves you stuck, when you could be putting all that energy into controlling what you can control. Beware of setting yourself up for

Be ready to talk. And to listen.

Keep in mind that if you seek closure with another person, this needs to be a two-way conversation. Talk about what happened from your perspective and how you are feeling as a result. And give the other person an opportunity to talk about what they experienced, even if you may not want to hear what they have to say.

The Downside of Closure

The closure we experience in real life may not look at all like the closure we see in the movies. Why? Well, because people are human and they don’t aways think, feel, or behave the way we would like them to.

Closure comes with risks.

When you tell another person how you feel about the way they have treated you, they may give you the closure you are hoping for. They may agree with you, ask you how they can rectify things between you. Instant reset! Or they may not agree with you and point out what they see as your failures. Or they may gaslight you, and tell you everything is fine, and aren’t you being a little bit dramatic? They may even tell you it’s time for the two of you to part ways. They may all just refuse to talk.

Let’s face it. People can just be plain old unpredictable and limited.

Whether we like it or not. And they may avoid a conversation that may be uncomfortable for them. If you’re expecting something from someone that they can’t or won’t deliver, then you are, like my mom used to say, trying to get blood out of a turnip. It’s a lose-lose, and you’re only hurting yourself.

Move Forward With Power!

You don’t have to stay stuck while you wait to find closure. Here’s how to get moving forward:

Embrace gratitude.

Be grateful that you are a multi-faceted human being, resilient and resourceful. Remind yourself of this every day, multiple times a day if you need to. Stay grateful for all the good things in your life. Make a list if you need to. Review it often.

Choose to move on.

When I have a client stuck in their demands for closure, in a very kind way, I say something to the effect of, “Do you think you might be kind of having a temper tantrum right now?” A question, not a judgment. We can’t change the random and mysterious way that life works, including changes in our health status. Again, we can’t change how another person chooses to think, feel, or behave. Trying to do otherwise only leads to frustration, sadness, anger, and disappointment. In a perfect world, we would all have the closure we need. Answers to the why question. Understanding. Forgiveness. But the world sure isn’t perfect. You have a choice. Choose to accept life on life’s terms. Focus on doing the best you can for yourself and the people you love.

Here’s the bottom line on closure.

Sometimes the only closure is to accept that there is no closure. Move on with your life. Eyes forward. Head held high. That’s empowerment!

Emotional Eating vs True Hunger - A WINTER RESET

Emotional Eating vs True Hunger - A WINTER RESET LFH Issue 2025 Vol. 23

by: Megan Allen, RD, LD, CDCES

We often blame holiday parties and rich desserts for winter weight gain, but the real culprit might be more subtle: emotional eating. When the days grow shorter and the cold settles in, it’s easy for our bodies and minds to shift in ways that can make food feel like the fastest route to comfort. However, the slower pace of winter offers a chance to notice these patterns and approach them with curiosity rather than judgment. One of the biggest challenges for many people is learning to tell the difference between emotional hunger and true hunger. True hunger builds gradually and can usually be satisfied by a range of foods. Emotional hunger often appears suddenly, feels urgent and is tied to specific cravings. A great way to start learning the skill of eating for true or physical hunger is to pause before eating and ask yourself a couple of questions.

Am I physically hungry?

This is the first simple question you should ask yourself. If you are, go ahead and eat! Honoring your physical hunger is an important step to healing your relationship with food and your body. Choosing snacks or meals that include protein, healthy fats, and high fiber carbohydrates can help maintain a stable mood and good energy. It’s also important not to overlook hydration, since thirst cues may be diminished when the weather is cold. For those on medications that suppress appetite, such as a GLP-1, these cues may feel different depending on your dose. Working with a knowledgeable Registered Dietitian while on this type of medication can help individuals honor their hunger and fullness cues while still nourishing their body appropriately.

What am I feeling?

This is the second question to ask yourself if you find yourself wanting to eat for emotional reasons. Are you tired, lonely, overwhelmed, or bored? This is an important question because once you can name the feeling, it becomes easier to find an answer to the next question which is: “What do I need?” If you’re feeling tired, maybe you need a nap, an early bedtime, or maybe an extra glass of water and a 10-minute walk outside. If you’re lonely, maybe you need to call or text a friend or family member. You might even try going to a local coffee shop or library for a few hours just to be around other people, even if they’re strangers. If you’re feeling stressed, maybe what you really need is a written plan for tackling a stressful task. If eating still feels appealing after addressing the underlying feeling, it can then be an intentional choice rather than an impulsive one. The goal is to ensure food is not your first and only means for coping with uncomfortable emotions.

Emotional eating isn’t something to erase; it’s a signal worth listening to. This winter, when the impulse to snack strikes, take a moment to ask yourself what you’re truly feeling and what you genuinely need. You might find that the comfort you’re craving isn’t in the kitchen after all.

LadyBugs Westward Bound - Utah 2025

August 8-10, 2025 - Downtown Sheraton Salt Lake, Utah - By: Nelly Miranda

My daughter Alexa and I are so grateful for the opportunity to attend the CHES LadyBugs Women’s Retreat for the first time, which took place in Salt Lake City this past August. We knew there was a lot of interest from women to teens who wanted to go, so we felt incredibly lucky and excited to be part of it. Alexa was excited to reconnect with moms she met as a Family Pal at the CHES Inhibitor Camp. We were surprised to find that many attendees were also first timers like us. Spanish translation provided Nelly Miranda.

From the moment we arrived, we met women who had traveled from different parts of the country, including Puerto Rico. Spanish is my first language. It was especially meaningful to find that several of us spoke both English and Spanish. We had the chance to sit at different tables throughout the retreat, which allowed us to connect with so many incredible women and hear about their journeys, including those still waiting for a diagnosis. The event was exceptionally well organized, from the travel arrangements to the carefully planned educational sessions, all put together with so much care so we could learn and grow together. We also had the opportunity to hear from fellow participants, whose stories inspired us to return home and continue advocating for better diagnosis of bleeding disorders in girls, teens, and adults. Alexa especially liked how our lanyard colors corresponded to different bleeding disorders. It was such a creative way to know who shared your bleeding disorder.

Traducción al español 2/3 Desde que llegamos, conocimos a mujeres que habían viajado desde diferentes partes del país y de Puerto Rico. Mi idioma natal es español, y fue una sorpresa encontrarnos con varias participantes que hablamos inglés y español. Tuvimos la oportunidad de sentarnos en mesas diferentes y así conocer a muchas mujeres con historias increíbles, incluyendo algunas que todavía no han sido diagnosticadas. La organización del evento fue de lo mejor, desde la compra de los boletos de avión, hasta las sesiones educativas, planeadas con mucho esfuerzo y cariño para que pudiéramos aprender juntas. Escuchamos a participantes que nos compartieron sus experiencias, lo cual nos inspiró más para regresar a casa con más ganas de seguir luchando por un mejor diagnóstico de los desórdenes de coagulación en niñas, adolescentes y mujeres adultas. A Alexa le encantó que los colores de los gafetes con nuestros nombres estuviera relacionado con el tipo de desorden de coagulación que tenemos. Pensamos que fue una forma súper creativa de saber con quienes compartías tu desorden de coagulación.

Traducción al español 1/3 Mi hija Alexa y yo estamos profundamente agradecidas por haber tenido la oportunidad de participar por primera vez en el Retiro de Mujeres de CHES LadyBugs que se llevó a cabo en Salt Lake City este pasado agosto. Sabíamos que muchas mujeres y adolescentes habían mostrado interés de asistir, así que nos sentimos muy emocionadas y afortunadas de haber sido seleccionadas para participar. Alexa estaba especialmente emocionada por reencontrarse con algunas mamás que conoció cuando fue Family Pal en el campamento de CHES para familias con inhibidores este verano. Nos sorprendió ver que muchas asistentes era la primera vez que participaban, de la misma forma que nosotras.

There were so many amazing sessions but one that made an impact on both of us was Joint Health with PT Angela Kouri. Alexa was recently diagnosed with Ehlers-Danlos Syndrome and has been struggling with joint pain. Angela’s advice was incredibly helpful, and she even followed up with additional resources afterward. We can’t forget to mention the food, it was delicious! The Saturday night pajama party was unforgettable. We decorated sandals, got special manicures and body massages, ate ice cream and bonded with everyone in our pjs like one big family. We are so grateful to CHES, LadyBugs and the Utah Hemophilia Foundation for running such an insightful, fun, and empowering event

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Traducción al español 3/3 Hubo muchas sesiones educativas increíbles, pero una que nos impactó a las dos fue la de Salud Articular con la fisioterapeuta Angela Kouri. Alexa fue diagnosticada hace poco con el Síndrome de Ehlers-Danlos y le ha costado entender el dolor en las articulaciones. Los consejos de Angela le sirvieron mucho, estuvo en contacto con ella enviándole más información. Las comidas fueron deliciosas y la fiesta en pijama del sábado por la noche fue inolvidable. Decoramos sandalias, nos consintieron con manicuras especiales, masajes, comimos helados y platicamos de lo más a gusto en nuestra pijama como una gran familia. Estamos super agradecidas con CHES, LadyBugs y con Utah Hemophilia Foundation por organizar un evento tan inspirador, divertido y que nos ayudó a empoderarnos.

The Future of Care for Women with Bleeding Disorders - LFH 2024 Issue

Rebalancing Agents - On the Horizon - LFH 2024 Issue

Those of us in the inhibitor community who attended the Inhibitor Summits have been hearing about future therapies that would potentially provide more efficacious treatment for years. As with all product development, the process to get to market is long, and not always successful. Product safety remains a priority, especially for our bleeding disorder community. These new therapies, however, bring hope to the inhibitor community; especially for those with hemophilia B and an inhibitor who have very few options for effective treatment. Rebalancing therapies that increase thrombin by lowering anticoagulants are within reach. There is a lot to know and understand about their mechanism of action.

• Familiarize yourself with the vocabulary

• Take advantage of webinars or educational resources as they present themselves

• And ask your healthcare professional (HCP) LOTS of questions

Product choice is ultimately a decision made between you/your child and your HCP. We know well in this community, that not every product works the same for everyone, and if you know one inhibitor patient-you know ONE inhibitor patient.

Fresh Inhibitor Parents Discover Families Alike

by Ashley Hall

Published: LifeLines for Health, vol. 21 (2024)

We first learned that our son Maverick had developed inhibitors after spending the first few months of his life in the hospital. We were devastated by the news and after hearing that word, we were in total shock! How could this happen? Why us? But most importantly why him? It was such a scary and frightening time in our lives, and we were so lost! We thought we were already pros at dealing with the hemophilia part since it ran in my family and my middle son had already been diagnosed as having severe hemophilia A. 

That’s when I set out on a mission to start learning anything and everything I could about what life with an inhibitor was about to start looking like for us. We were in uncharted territory as no two cases I had found were the same. All I knew is that it had never ran in my family previously, so we were clueless when it came to the inhibitor aspect. I started to read stories where some kids beat them, while some never could. We hardly knew any families with young kids, and I just remember feeling so scared and confused with so many questions still left unanswered.

That’s when someone messaged me one day telling me about CHES Foundation, Inc and invited us to attend their camp, After the Shock, so that we could meet families just like ours going through some of the exact same things! That someone also just so happened to take me under her wing and helped teach me everything she knew about inhibitors and treated us like family from the start! I will forever be grateful for Mrs. Janet! She is and forever will be my inhibitor mama!! 

We jumped at the opportunity and I’m so glad we did! CHES provided us with a safe space to vent about medical issues going on in our lives, yet we were also able to get much needed clarity and guidance by other families going through similar treatments. We bonded instantly with other families and my kids were able to meet other kids going through very similar situations! They were able to have a weekend of some type of normalcy where they could laugh and play and run free knowing we had the proper help on standby if anything were to occur. 

The After the Shock Inhibitor Family camp provided onsite nurses, industry representatives who were available to answer any questions they could about certain medications and most importantly we had HELP! We had a personal helper called a Pal who had inhibitors himself so we knew we could relax and be stress free knowing they knew how to help in case an injury occurred. It was a weekend of fun and fellowship and most importantly education.

My kids loved fishing, archery, and we all enjoyed the cooking class together. Although Maverick at some point seemed to be enjoying eating the food more than the actual cooking part!  Just seeing our kids run around with other kids like them made the journey up to Camp Zeke in Pennsylvania for the After the Shock camp well worth it! The educational classes were spot on and just what my husband and I needed to help us make more educated decisions in our future! This is a smaller community that is much needed to help give us the mental and physical support we desperately needed! Nobody should fight inhibitiors alone, and having an army of people who understand exactly what you’re going through makes you feel like you can conquer anything! Especially these pesky inhibitors!

We made friendships that turned into family and bonds that will last a lifetime. Whenever we attend a new program and learn something new that we didn’t know before, that is always a win in our book. We have been fighting Maverick’s inhibitor through every other day Immune Tolerance Induction Treatment for the past year and a half and currently still fighting. Although everyday seems like a challenge, we remain hopeful and can’t wait until we get the chance to reunite with our inhibitor families once again!