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Are you living a life or living an illness? Navigating Life-Changing Medical Diagnoses

Updated: Nov 13, 2023

A Compassionate Guide to Hope and Self-Management


Have you ever sat in a doctor’s parking lot and sobbed in your car? I sure have. Getting bad news about your health upsets your entire world. How do you handle the mind-numbing terror of receiving a life-changing medical diagnosis, let alone, integrate this illness into your life, your self-identity, your family and live a meaningful life?


Receiving a life-changing medical diagnosis, from migraines to heart disease, Crohn’s disease, cancer, and all the many other awful ailments, can be an overwhelming and emotionally turbulent experience. It’s complicated and challenging. The mix of emotions that follow can be intense, with grief often taking center stage. It's important to recognize that these feelings are entirely normal and part of the human experience. It’s a journey no one wants to go on. But sooner or later, we are all going to find out more about our bodies and how little control we really have.


Many of us have received awful and irritating diagnoses, leading to long-term, maintenance medications, having to undergo dreadful and expensive procedures, and making lifestyle changes that well, really suck. If this is you, then I want to extend my heartfelt support and provide you with valuable insights, self-management tips, and empathetic guidance to help you navigate this difficult journey.


Self-Management Tips

One of the first steps in dealing with a life-altering diagnosis is to take charge of your health. Educate yourself about your condition and treatment options. Engage with your healthcare team, ask questions, and seek second opinions if needed. You are a unique individual and everyone with your condition presents differently. Remember, knowledge is power, and understanding your condition can help you make informed decisions about your care.


Understanding the Grief Process:

One of the first emotional hurdles that many individuals face after a life-altering diagnosis is grief. Grief is not just the loss of a loved one; it is also the loss of health and the life you once knew. You will grieve the future as well, and things you can no longer do. Take the time to feel this loss.


Denial is often an early stage of this grief process, where you may find yourself struggling to accept the reality of your diagnosis. It's a natural reaction to an extraordinary situation. It’s completely normal to live in denial for a while, maybe even years. It’s easier to pretend, or blame doctors, or minimize your experience.


It's important to understand that denial is a common coping mechanism and that it's okay to have these feelings. In time, with the right support, you can begin to move through the stages of grief toward acceptance.


Dealing with Insurance:

Copay assistance? Deductible? Out of pocket? You will soon know these terms very well. Being ill is very expensive here in America, and the financial stress is an additional burden. Understanding your insurance can be overwhelming, and we have all avoided making the calls due to being afraid. But, it's essential to reach out to your healthcare provider or a patient advocate to help you navigate the complexities of insurance coverage. Don't hesitate to ask questions and seek clarification, ensuring that you receive the care and support you need without unnecessary financial burden. Document every conversation, and keep notes of all your findings.


The Impact on Relationships:

Facing a life-altering diagnosis can also lead to changes in your relationships. Friends and family may distance themselves out of fear and discomfort, not because they don't care, but because they are unsure how to offer support. It happens all the time. Open communication can bridge this gap, allowing you to express your needs and concerns, and help your loved ones understand how they can be there for you during this challenging time. Be clear about what you want and need!


Mental Health and Coping Skills:

Life-changing diagnoses bring fear of the unknown, a sense of loss, and a disruption of your future plans. It's crucial to acknowledge that your mental health may be at risk. Research shows that feelings of anxiety, depression, and isolation increase dramatically with a medical diagnosis. Seek professional counseling or support groups to help you cope with these emotions. Additionally, practice self-care and coping skills such as mindfulness, meditation, and journaling to manage the emotional rollercoaster. Remember, seeking support is a sign of strength, not weakness.


The Importance of Holistic Care:

Holistic care is about treating the whole person, not just the disease. You are more than your disease. I’ve outlined some essential components of holistic care below. I’m convinced one of the best ways to deal with a chronic disease is to learn how to cook (if you are able). Learn how to make simple, delicious soups that can be frozen, make muffins, or anything that will help you feel better. These practices help you gain some control over your life and enhance your overall well-being.


Holistic care is an empowering, comprehensive approach that encompasses various aspects of your life:


1. Good Nutrition: This is vital. Eating well can help boost your immune system and energy levels. Consult with a nutritionist or do your own research to create a balanced diet tailored to your unique needs.


2. Hydration: Also vital. Being sick doesn't mean you don't drink your water. Staying adequately hydrated is crucial for maintaining your physical and mental health. Dehydration can exacerbate fatigue and stress. Plus, let’s not add kidney stones to your issues!


3. Sleep: It’s the worst–when you’re sick and taking meds, your sleep is awful. But, quality sleep is essential for healing. Getting 8-9 hours of good sleep is frankly magical. Follow good sleep hygiene if you can. And if sleep troubles persist, consider discussing them with a healthcare professional.


4. Exercise: While physical activity must be tailored to your diagnosis, maintaining mobility and strength can improve your overall well-being. It might be a slow walk, puttering in the garden, or yoga. Find a way to move your body and breathe.


5. Hobbies: Engaging in activities you love can provide a sense of purpose and help you cope with stress. If you’re sitting a lot, then it’s time to embrace my favorite–textiles! Try knitting, crochet, embroidery, or do some puzzles, whittle wood, bird watching, whatever, but find something that excites you and brings you joy.


6. Social Interaction: Stay connected with friends and loved ones who provide emotional support. Consider joining a support group to connect with individuals who understand your situation. Technology allows you to hang out with friends and family all over the country and world. You can even watch a show together.


7. Spiritual Well-being: For those with spiritual beliefs, nurturing your spiritual side can bring comfort and a sense of purpose.


Pain Management and Mindfulness:

Pain is a significant aspect of living with a chronic illness. Stress increases pain receptors, which causes more stress. You have to actively relax when you feel the worst. Research proves that using mindful interventions for pain management, such as deep breathing exercises, meditation, or guided imagery, can be remarkably effective in alleviating physical discomfort and promoting relaxation. In fact, in many cases, mindfulness can be as effective as taking opioids.


An Existential Perspective:

Life-altering diagnoses often prompt existential questions about the meaning and purpose of life. It's entirely natural to grapple with these profound issues. Consider seeking guidance from a counselor or therapist who specializes in existential concerns, like me, who’s not afraid to go deep and dark, and help you navigate your concerns.


Career and Roles:

Maintaining your career roles and responsibilities can be challenging but is essential for your sense of identity and purpose. Communicate openly with your employer about your diagnosis and explore potential workplace accommodations. Remember that your career can adapt and evolve to accommodate your health needs.


Addressing the Unique Challenges of Adolescents and Young Adults (AYAs):

Teens and young adults facing life-altering diagnoses encounter a set of unique challenges. They must have a safe space to express feelings and concerns and maintain a sense of normalcy by staying connected with friends, participating in age-appropriate activities, and seeking peer support.


There is little research, but we know that AYAs have very specific needs as they move into adulthood with chronic illnesses. They may grapple with issues related to body image, peer relationships, and future plans. College plans, living independently, and financial security can be complicated.


If you are an AYA, you should have a say in your treatment. You need to be involved in treatment decisions and future planning. Get empowered to take charge of your health and advocate for your needs. Encourage open communication with parents, friends, and healthcare providers. Seek support from age-appropriate resources and consider connecting with peer support groups to help navigate these unique challenges.


(I have a separate post for AYAs and illness that I’ll post soon)


Conclusion:

In the face of a life-altering medical diagnosis, remember that you are not alone. Healing encompasses your mind, body, and spirit. Seek support from healthcare professionals, friends, and family, and explore holistic care options to regain a sense of control over your life. Please feel free to reach out with any questions you may have, and know that there is a community of support ready to walk beside you on this journey.


*Are you dealing with anxiety, stress, or grief and concerned about how you will get through the week? Contact me for available appointments for grief counseling, family counseling to create and maintain boundaries, and counseling to relieve anxiety, stress and help with life transitions.


Research links for more:


Allen, T., Reda, S., Martin, S., Long, P., Franklin, A., Bedoya, S. Z., Wiener, L., & Wolters, P. L. (2022). The Needs of Adolescents and Young Adults with Chronic Illness: Results of a Quality Improvement Survey. Children (Basel, Switzerland), 9(4), 500. https://doi.org/10.3390/children9040500


Bhatti, Z., Salek, M., & Finlay, A. (2011). Chronic diseases influence major life changing decisions: a new domain in quality of life research. Journal of the Royal Society of Medicine, 104(6), 241–250. https://doi.org/10.1258/jrsm.2011.110010


Whittemore, R., & Dixon, J. (2008). Chronic illness: the process of integration. Journal of clinical nursing, 17(7B), 177–187. https://doi.org/10.1111/j.1365-2702.2007.02244.x


Zeidan, F., & Vago, D. R. (2016). Mindfulness meditation-based pain relief: a mechanistic account. Annals of the New York Academy of Sciences, 1373(1), 114–127. https://doi.org/10.1111/nyas.13153


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