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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

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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

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Find Comfort in the Moment

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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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Managing Depression alongside Chronic Illness

Managing Depression alongside Chronic Illness

by | Chronic Illness, Coping, Depression, Self Acceptance

If you’re reading this, chances are you or someone you care about is dealing with the challenges of chronic illness or disability, which can often trigger feelings of depression. Today, we’re going to dive into some strategies for navigating this journey with resilience.

1. Understanding Ableism

First things first, let’s address the elephant in the room: ableism. Abelism can be a significant barrier to navigating life with chronic illness and can exacerbate feelings of isolation and depression. Here are some examples of ableism faced by individuals with chronic illness:

  • Minimization: Others may downplay the severity or impact of a chronic illness, dismissing it as “not that bad” or “just a phase.” This minimization can invalidate the individual’s experiences and undermine their need for support and understanding.
  • Lack of Empathy: Some people may struggle to empathize with the daily challenges and limitations faced by individuals with chronic illness. They may fail to recognize the physical and emotional toll of living with a chronic condition, leading to a lack of support and understanding.
  • Comments to “Get Over It”: Individuals with chronic illness may encounter comments suggesting that they should simply “get over it” or “try harder” to overcome their symptoms. This attitude fails to acknowledge the complex nature of chronic illness and the impact it can have on a person’s life, perpetuating stigma and misunderstanding.
  • Inaccessibility: Public spaces, workplaces, and social events may lack accommodations for individuals with chronic illness, such as accessible seating, rest areas, or flexible work arrangements. This lack of accessibility can create additional barriers and challenges for individuals already navigating the complexities of their condition.
  • Stigmatizing Language: Negative stereotypes and stigmatizing language surrounding chronic illness can contribute to external ableism. Terms like “lazy,” “weak,” or “attention-seeking” may be used to describe individuals with chronic conditions, further marginalizing and isolating them.

Addressing external ableism involves advocacy and challenging stereotypes. To combat ableism effectively, we must champion inclusivity and understanding, educating others about diverse disabilities, and promoting empathy and accommodation for all individuals. Remember, your strength and resilience define you, not your limitations.

Keep in mind that abelism can become internalized. Internalized abelism occurs when individuals with chronic conditions come to believe the negative stereotypes and societal messages about their own worth and capabilities. Internally, individuals must confront and unlearn negative beliefs about themselves, fostering self-compassion, honoring their limits, and seeking support.

2. Cultivating Self-Compassion

Living with chronic illness or disability can sometimes feel like waging a constant battle against our own bodies, leading to profound feelings of depression. In these moments, practicing self-compassion becomes essential. Instead of berating ourselves for what we can’t do, let’s celebrate our victories, no matter how small they may seem.

One way to cultivate self-compassion is through mindfulness meditation. Take a few minutes each day to sit quietly, focusing on your breath and offering yourself words of kindness and understanding, especially when you’re feeling discouraged. Remember, you are doing the best you can with the cards you’ve been dealt. Self-compassion can also involve setting achievable goals that align with your current abilities and energy levels. Breaking tasks down into smaller, manageable steps and celebrating progress along the way, even if it’s slower than you’d like. Read more about this concept (often called “Spoon Theory”) here.

3. Prioritizing Self-Care

When dealing with chronic illness or disability, self-care isn’t just a luxury; it’s a necessity, especially in managing depression. This means listening to your body and honoring its needs, whether that’s getting enough rest, eating nourishing foods, or engaging in activities that bring you joy.

Here are some practical steps to prioritize self-care:

  1. Create a daily self-care routine: Set aside dedicated time each day for activities that recharge your batteries, whether it’s taking a bubble bath, going for a walk in nature, or curling up with a good book. These activities can provide relief from the symptoms of depression.
  2. Reach out for support: Don’t be afraid to lean on friends, family, or support groups for help when you need it, especially when depression feels overwhelming. You are not alone in this journey, and there are people who care about you and want to see you thrive.
  3. Practice saying no: Learn to set boundaries and say no to things that drain your energy or don’t align with your priorities, especially when depression makes it difficult to muster the energy for extra tasks. Remember, it’s okay to put yourself first sometimes, especially when it comes to managing depression.

4. Embracing Radical Acceptance

Radical acceptance is about fully embracing reality as it is, rather than fighting against it, even in the face of a chrnoic illness that you did not choose. This doesn’t mean resigning ourselves to a life of suffering, but rather acknowledging the truth of our circumstances and choosing to respond with compassion and equanimity.

In the face of chronic illness or disability, radical acceptance can be a powerful tool for finding peace and contentment in the present moment, even amidst depression. Instead of dwelling on what we’ve lost or longing for a different reality, let’s focus on what we still have and cultivate gratitude for the blessings in our lives.

 

Navigating chronic illness and disability is no easy feat. By challenging ableism, practicing self-compassion, prioritizing self-care, and embracing radical acceptance, we can cultivate resilience and thrive in the midst of adversity.

If you find yourself struggling to manage depression or cope with the challenges of chronic illness or disability, remember that help is available. Don’t hesitate to reach out and schedule an appointment with a counselor on our team for professional counseling support tailored to your unique needs.

Seasonal Depression and The PNW Rainy Season

Seasonal Depression and The PNW Rainy Season

by | Oct 20, 2022 |

What is SAD? Seasonal Affective Disorder (SAD), often called seasonal depression, is estimated to affect roughly 5% of the population at any given time. Although it can occur with any seasonal change, the predominant timeframe is depressive symptoms starting with a...