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Advocating for Care and Safety Within Chronic Illnesses

Advocating for Care and Safety Within Chronic Illnesses

by | Chronic Illness

Creating a Medical Advocacy Plan

Calling doctors, sitting on waitlists, undergoing test after test, and experiencing unpredictable ebbs and flows in your health are just some of the things that folks with chronic illnesses manage as a part of daily life. Experiences of being unheard, dismissed, or misunderstood can leave people with anxiety and fear that makes navigating medical care that much harder. How do you move from this space to one of hope?

 It’s an unfortunate reality that healthcare is not always attuned with what you need. Many folks who manage chronic health conditions have experiences of being dismissed or having your autonomy violated during appointments, sometimes leading to anxiety, depression, or medical trauma.

Balancing these heavy burdens with the need to continue seeking care can feel overwhelming, especially on top of uncomfortable or confusing symptoms.

 Still, there is hope. By reflecting on your needs and experiences, exploring options, and taking time to intentionally structure care, healthcare can be approachable. A trauma-informed and accessible way to do this is by creating a Medical Advocacy Plan. A Medical Advocacy Plan focuses on adding clear structure and boundaries around stressful healthcare experiences in order to maintain your autonomy in these settings. Here are some steps you may take when creating a safety plan, either on your own or with the help of a therapist or other trusted support person.

Empower Your Medical Journey

Discover how to take control of your healthcare experience with confidence and clarity. Learn strategies to communicate effectively with your providers and build a support system that works for you.

Finding Your Voice

Want to Dive Deeper?

After reading this article, connect with a Star Meadow Counseling therapist to process your experiences with medical care and chronic illness.

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1

Think About Your "Why"

2

Build a Support Structure

3

Find Comfort in the Moment

4

Know Your Boundaries

1. Think About Your "Why"

What do you hope to achieve in this interaction? Are you scheduling an appointment, reporting new symptoms, or seeking a second opinion? When you wrap up this interaction, what do you want to make sure you accomplished or expressed to your care team? Take a moment to write down a few sentences about your goals. Aim to keep it concise, simple, and focused on your own actions. For example, if I want to talk about how a new medication isn’t a great fit, I might write “I want to tell Dr. C that my biologic injection is making me feel tired, and that I am having persistent symptoms.” However, I probably wouldn’t write “I want my doctor to change my medication during this appointment.” Focusing on what you want to communicate versus what you want to hear from your team can help reinforce your sense of autonomy and allow for collaboration with your providers.

Counseling goal

2. Build a Support Structure

When preparing for a call, procedure, or appointment, it can be helpful to think beyond the task itself. Think about what you can do before and after the appointment to create support that works for you. Are you nervous about calling your office’s nurse line? Think about the leadup- what makes you feel most at ease? Do you need to put a time in your calendar to make this call? What about calming your nervous system before dialing the number- can you have a snack, meditate, or watch a distracting show for a few minutes? Similarly, think about what happens when you hang up your phone or leave the appointment. Can you ride home with a loved one, take a walk around the neighborhood, or engage in your favorite coping skills right after you wrap up? If not, can you schedule a time to unwind soon? Write these things down to ensure that when you’re feeling overwhelmed, you don’t have to think of all of these things in the moment.

If you’re noticing that it’s challenging to identify skills or resources to use as support, it may be helpful to begin working with a therapist who can help you explore options.

 

3. Find Comfort in the Moment

Just as regulating your nervous system before and after are vital but often-skipped steps, so too is taking care of yourself while you’re engaging in healthcare tasks. Notice what you’re feeling most concerned about, and identify ways to respond to those things. Engage in sensory activities like using fidget toys, wearing calming scents (check your providers’ perfume policy if you’re in person), wearing tinted glasses or turning down lights in your home, and more. Can you bring a loved one to appointments, or request a medical chaperone? What about sitting in a comfortable chair in a private space while making a difficult call or checking test results? Is the service you’re accessing aware and accommodating of any disabilities you have? Taking steps to ensure comfort can enhance your body’s sense of safety during stressful situations.

 

4. Know Your Boundaries

It’s time to talk about consent and autonomy. Unfortunately, there are times where consent is violated and trust is broken in relationships, and this can include medical professionals. It is never your fault if this happens to you. Having clear boundaries around what is and is not okay can help you react when you feel unsafe. Take a moment and think about what these boundaries are for you. What physical contact are you okay with your provider having with you, both one-on-one or with others present? Do you want your provider to check in before touching your body or administering treatment? What information do you want them to say out loud and what do you prefer to keep in writing? What about explaining the reason behind different interventions?

Knowing where exits are, sitting closer to doors or personal belongings when possible, and having an accessible way to contact help or support can be reassuring and safety affirming. This can be especially important if you are someone who has experienced trauma that may be triggered in these situations. Feel empowered to talk to your provider about your concerns and boundaries so that they respect them, and reinforce them when you need to. You may choose to share your written Medical Advocacy Plan plan with your doctor in order to communicate those boundaries. Other ways to directly communicate your needs may be writing an email or letter to your provider, requesting a phone consultation prior to your first appointment, asking for requests to be noted in your medical chart, or having a conversation at the beginning of appointments.

If you feel that you have experienced medical trauma or want support with these topics, it may be important that you seek support with a therapist. Therapists can assist you in processing your experiences, identifying next steps, and building up your sense of safety and personal autonomy.

 

Communicating Your Boundaries

The Importance of Setting Boundaries with Medical Professionals

Medical care and safety are not one-size-fits-all. What makes you feel safe and successful may be very different from what another person needs. Taking time to understand yourself and setting up structure around your needs can have a huge impact on your experiences. A Medical Advocacy Plan can be a great tool to create this structure and care for your future self. Additionally, it is important to remember that you do not have to go through this alone. Seeking support from loved ones can be helpful, as well as beginning work with a therapist on the creation of this advocacy plan or other topics you want support with. If you would like to talk with a Star Meadow counselor about your experiences with medical care and chronic illness, please reach out and request an appointment.

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If you’re feeling overwhelmed or need someone to talk to, our counselors are here to help. Schedule an appointment today and start your journey towards better mental health and well-being.
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How Do You Know You Had Emotionally Immature Parents?

How Do You Know You Had Emotionally Immature Parents?

by | Group Therapy, Relationships

Dr. Lindsay C. Gibson’s book Adult Children of Emotionally Immature Parents offers a guide to recognizing, processing, and healing from the effects of emotionally immature parenting. But, how do you know that your parent (or parents) may be emotionally immature? And, what does that mean for you?

 

The first step on this journey is to listen to your gut. Do you remember a childhood where you felt anxious, unsure, or alone often? Or, do you have memories of your parent acting in a withdrawn, dismissive way? Or maybe, your parent pushed you towards perfecting in every way, leaving you feeling as if you could never meet their standards. These are just a few of the wide range of signs that you may have grown up with an emotionally immature parent. Even though you are an adult, these feelings and memories take deep roots and can affect the way that you approach relationships with others and, most importantly, with yourself.

 

There are generally four types of emotionally immature parents that Dr. Gibson describes in her book:

  1. Emotional Parents– These parents are unpredictable and confusing, often varying suddenly between deep involvement with their child to dismissal and silence. These parents are driven by anxiety and often make others rescue them or, if others are not complacent, treat others like they have abandoned them entirely.
  2. Driven Parents– These parents are incredibly busy and focused on progress and perfection. They often have such a tight schedule that their children may feel distant from them, often only interacting when the parent wants to have control over an aspect of their childrens’ lives. They may be seen as “egocentric” by others, but likely are unaware of this in themselves.
  3. Passive Parents– These parents have a ‘out of sight, out of mind’ approach to parenting that often results in minimizing issues and relying on others to make decisions. These parents are often available to a certain point, but eventually become overwhelmed and leave their children to figure things out for themselves. Sometimes, these parents become enabling with an abusive or neglectful partner, choosing not to step in and protect their child when needed.
  4. Rejecting Parents– This type of parent appears to be disinterested in having children or a family at all. They often seem bothered by the presence of their children, treating them more like burdens than valued and loved members of their family. They can be angry, mocking, and hostile towards others, and generally appear to want to be their own person rather than a parent.

 

Parents, like all people, are complex and will not fit into these categories perfectly. Some parents may exhibit multiple types of parenting styles, while others may even have some healthy behaviors mixed in. Each type is on a spectrum as well, with a range of mild to severe forms of each category existing. Regardless, if your parent aligns with one or many of these categories, it is likely they were emotionally immature to some degree when you were a child in their care.

 

Reading this kind of content can feel uncomfortable for people who are exploring this topic for the first time. You may feel like you didn’t have a “bad enough” childhood, or know that others “had it worse”. You may have feelings of guilt for labeling your parent, or have a sense that you are “betraying” them by considering their flaws. You may also have an instinctual feeling that something feels wrong about your childhood, but may be struggling to perfectly fit your memories into the parameters described here. All of these feelings are valid and common, and often come up for people who have some form of emotionally immature parents.

 

The reality is, many parents are doing as well as they can with the resources they have, but may have caused harm or pain despite their efforts. Doing the work to understand how their parenting affected you is a courageous step towards healing. Many people who engage in this journey come away with a deeper understanding of who they are, what they want/need, and how they can apply this knowledge to build secure, healthy relationships with their parents and other important people in their life.

 

You are not alone in this journey! Star Meadow is offering a low-cost counseling group centered around this book, where you have an opportunity to read and process with others who have similar experiences to you. This group is led by Hannah Williams, a intern therapist with lived experience as an adult with emotionally immature parents. Their goal is to help people to feel empowered and supported by a group of people who truly understand them. If this sounds like something you are interested in, reach out to [email protected] to set up a pre-group session or seek individual counseling services with them.

 

If you are interested in learning more, Dr. Gibson’s book is available at most major bookstores, as well as your local library in physical, e-book, or audiobook form.

 

 

 

 

Window of Tolerance 101

Window of Tolerance 101

by | Aug 15, 2024 | , ,

Strengthening Coping Strategies Widening the Window of Tolerance The more adept we become at coping with distress, the more we strengthen our ability to experience the here-and-now sense of safety in therapy as we face our pain. When your therapist helps you ground,...