Hi friends!
This is part of a little series I’m conducting on mental health. I’ll be posting soon on a mult-part interview I’m conducting with the CEO of the Grief Recovery Center that I think will be helpful, so stay tuned for that.
Living with lipedema can be emotionally challenging, especially when it comes to grappling with the changes in body image and health.
Some of the things lipedema patients might experience include:
- The burden of managing the disease: with all the things we have to do to care for self like wearing compression, dry brushing, swimming, pumping, doing manual lymphatic drainage, skin care, going to the CLT. And don’t forget navigating the whole healthcare system and insurance. It can be a lot.
- An Identity Shift: Coping with a shift in self-identity as we navigate changes in physical abilities, appearance, and their role within relationships and communities.
- Uncertainty and Fear: Dealing with the uncertainty of the future and the fear that accompanies health challenges. This fear may be related to the progression of the condition, medical treatments, or potential limitations on our quality of life.
- An Emotional Rollercoaster: We might be experiencing a range of emotions, including sadness, anger, frustration, and despair. The emotional impact can be intensified by the unpredictability of health fluctuations and the ongoing nature of many health conditions.
- Grief for Future Plans: Mourning the loss of future plans, dreams, and aspirations that may be altered or postponed due to health limitations. This can include career goals, travel plans, and personal milestones.
- An Impact on Relationships: Navigating changes in relationships with family, friends, and partners. Some individuals may feel a sense of burden, guilt, or shame, while others may encounter shifts in the dynamics of their support networks. I’ve heard many stories of women who keep saying no to invitations, and eventually quit being invited.
- Physical Pain and Discomfort: Coping with physical pain, discomfort, and the challenges associated with managing symptoms. The daily struggle with pain can contribute significantly to the emotional toll of health-related grief.
Coping with the grief of health change and all of these emotions is an essential aspect of self-care and mental well-being, along with developing new coping strategies and adaptive mechanisms to navigate the challenges of daily life. Let’s explore some things anyone dealing with lipedema or other health changes to help navigate this grief journey and to embrace a new sense of normalcy. Hopefully, using these strategies will help by balancing the grief with moments of hope and resilience and help us keep a positive mindset to get through and thrive.
Coping strategies to consider:
- Understanding Lipedema: One thing we can do is learn everything we can about whatever condition it is that we have – in this case, lipedema. Education and knowledge are power and take away some of the loss of control we experience.
Seeking Professional Support: Enlisting the help of healthcare professionals who specialize in lipedema can be a vital step in managing both the physical and emotional aspects of the condition. Connect with doctors, therapists, and support groups to share your experiences and gain valuable insights. There’s still a lingering stigma about mental health, but please remember mental health is health, and it is OK to get help. - Embracing the Grieving Process: Acknowledge the grief associated with changes in body image and health. Give yourself permission to feel and express these emotions. It’s a natural part of the healing process. If you remember from high school psychology, you might have those grief emotions like anger, depression, denial, bargaining and acceptance at any time and they don’t happen in order. It’s OK to feel these emotions.
- Cultivating Self-Compassion: Practice self-compassion by treating yourself with the same kindness and understanding that you would offer to a friend facing similar challenges. Remind yourself that your worth is not solely defined by your physical appearance.
Exploring Therapeutic Outlets: Engaging in therapeutic outlets such as counseling, art, or writing can provide a safe space for self-expression and reflection. Using technology to create videos on YouTube is even a good therapeutic outlet. Heck, I’m writing a book right now where I give myself therapy right in front of everyone. Creative activities can be powerful tools for processing emotions and fostering a positive mindset. - Building a Support System: Surround yourself with a supportive network of friends, family, and peers who understand your journey. Thank goodness for Facebook, where we’ve been able to find thousands of women going through the same journey. It felt forever like we were alone, and it’s fantastic to know we aren’t. Sharing your feelings and experiences with others who empathize can provide a sense of validation and camaraderie.
- Focusing on Abilities and Achievements: Shift the focus from perceived limitations to your unique strengths, abilities, and achievements. Celebrate personal victories, no matter how small, to cultivate a positive mindset. For me, focusing on abilities also means doing modified activities and continuing to find ways to do the things on my bucket list. But frankly, it’s also OK to grieve the fact that they aren’t happening the way you’d imagined. Even this change needs addressing.
- Prioritizing Self-Care: Incorporate self-care practices into your routine, emphasizing activities that promote physical and emotional well-being. This may include gentle exercises, mindfulness, and relaxation techniques, using our pumps, swimming, elevating legs, and drinking water.
- Educating Others: Advocate for awareness and understanding of lipedema within your social circles. Educating others can help dispel misconceptions and foster a more supportive environment. I’ve found this to be very helpful for my own process. I’m thankful for outlets where I can do that from home.
Living with lipedema presents unique challenges, but by acknowledging and addressing the grief associated with changes in body image and health, women can embark on a journey of self-discovery and self-love. Remember, you are not defined by your condition, and your strength and resilience are powerful assets on this path of healing. Embrace the journey, celebrate your victories, and surround yourself with a community that uplifts and supports you.
I hope this helps just one person today. Stay strong, friends,
Susan
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