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So You’re Chronically Ill, Now What?

In recent years, the number of people living with chronic illnesses has climbed dramatically—especially among younger adults. Conditions such as Fibromyalgia, Rheumatoid Arthritis, Lupus, Polycystic Ovary Syndrome (PCOS), Endometriosis, and Adenomyosis are being diagnosed more frequently and often overlap in complex ways.

According to a 2023 CDC analysis, about 76% of U.S. adults—nearly 194 million people—live with at least one chronic condition, and over half (51%) manage multiple chronic illnesses. Among adults aged 20–44, roughly six in ten report at least one chronic condition. These figures signal a growing public health challenge that is reshaping how we think about wellness, work, and everyday life.


When we look specifically at reproductive and autoimmune conditions, the numbers are even more striking. PCOS affects approximately 5–6 million women in the United States—roughly 7–10% of women of reproductive age—and some estimates suggest rates as high as 13%, with up to 70% of cases remaining undiagnosed. Similarly, Endometriosis affects at least 11% of U.S. women, or about 6.5 million, and diagnosis is often delayed by years.


These conditions are not only physically painful but also emotionally and financially taxing—especially for those juggling work, family, and navigating the healthcare system. In my own practice, I’ve seen a steady rise in clients aged 20 to 40 navigating chronic, life-altering diagnoses.


So, what steps can you take when faced with a chronic condition that changes the trajectory of your life? Let’s explore some tips.


1. Know the Prognosis

Some useful questions to consider:

  • How long will I have to manage this?

  • Is there no cure?

  • Are there known cases where the disease was put into remission or a less active state?

  • How will it impact my quality of life (as a student, professional, parent, or spouse)?

  • What should I expect over time?

  • What boundaries need to be drawn to support my ability to manage and maintain quality of life?


It’s essential to become knowledgeable about your condition. Throughout my experience with Endometriosis and Adenomyosis, understanding these diseases has helped me make informed decisions, set boundaries, and avoid unnecessary treatments. While some providers may not appreciate this, a good provider will welcome your active role in your treatment.


2. Know What Treatment Options Are Available

Ask yourself:

  • What are my treatment options, and what are their pros and cons?

  • Are there holistic or integrative options available?

  • Are there any clinical trials or off-label treatments worth exploring?

  • What’s new in current research?


You may need to research this independently or consult with vetted experts to separate misinformation from evidence-based care and find specialists who understand your condition.


3. Know Your Rights


You have more rights than many realize:

  • Your doctor cannot force you to accept any treatment you don’t want.

  • You can end a provider relationship at any time.

  • You can file a grievance or complaint if you were treated poorly or harmed.

  • You have full access to your medical records and can seek multiple opinions.

  • Employers must comply with state and federal laws when managing illness-related absences—it’s illegal to intimidate or discriminate against an ill employee.


Key Resources:

Paid Family Leave NY: https://paidfamilyleave.ny.gov/

ADA Accommodations & Job Support: https://askjan.org/


Also, review your employee handbook to understand your benefits, leave policies, and telecommuting options. Learn about COBRA (Consolidated Omnibus Budget Reconciliation Act) benefits—the continuation of employer health coverage. It’s often costly but can prevent coverage gaps during transitions.


If you can no longer work due to illness, look into state unemployment and Social Security Disability (SSD) benefits. SSD and Medicare may apply regardless of age if you’re permanently unable to work.


4. Know the Costs and Plan Ahead

Ask:

  • Will my health insurance cover my treatments?

  • Do I have out-of-network benefits?

  • What’s my deductible and coinsurance after it’s met?

  • Is there an out-of-pocket maximum, and what is it?


Once you hit your out-of-pocket max, you shouldn’t pay copays or coinsurance—many patients aren’t told this, so always verify with your insurer. It is wise to plan procedures that are in-network with a large coinsurance after the out-of-pocket max has been met. This can be difficult or easy depending on the state of your health over the course of the year.


Financial Assistance Resources:


5. Manage Your Risk

Unexpected medical bills can be stressful—especially when they’re sent in error. Before paying, always ask why you’re being billed. In New York, the Surprise Bill Act (2024) requires providers to give a good-faith estimate, and patients can dispute unfair charges.


Additional Protection Tips:

  • If self-employed, explore Paid Family Leave or disability coverage for sole proprietors: https://www.nysif.com/dbpfl/#/menu/

  • Maintain an emergency fund to cover deductibles or travel for care.


Smart Saving Options:

  • High-Yield Savings Account – I personally use American Express and love it.

  • HSA/FSA – Tax-free funds for medical expenses.

  • Auto-Save 5–10% of your income for future paid leave or emergencies.


Despite being a therapist, my journey with Endometriosis and A

denomyosis has been challenging and humbling. I’ve learned to balance care, career, and advocacy—and I hope this guide helps you feel more equipped to do the same.


Disclaimer: This post is based on my personal and professional experiences with chronic illness. Please verify all information or consult with a qualified professional before taking action.


💬 Have thoughts or additional tips? Share them in the comments! I’d love to hear from you!



References

  1. Centers for Disease Control and Prevention. (2023). Prevalence of Chronic Conditions Among U.S. Adults, 2023. Retrieved from https://www.cdc.gov/pcd/issues/2025/24_0539.htm

  2. American Action Forum. (2023). A Primer on Chronic Disease Among Adults in the United States. Retrieved from https://www.americanactionforum.org/insight/primer-chronic-disease-among-adults-in-the-united-states

  3. World Health Organization. (2023). Polycystic Ovary Syndrome Fact Sheet. Retrieved from https://www.who.int/news-room/fact-sheets/detail/polycystic-ovary-syndrome

  4. The Endocrine Society. (2024). PCOS Overview for Patients. Retrieved from https://www.endocrine.org/patient-engagement/endocrine-library/pcos

  5. American Society for Reproductive Medicine. (2023). International Evidence-Based Guideline for the Assessment and Management of PCOS. Retrieved from https://www.asrm.org

  6. U.S. Department of Health & Human Services, Office on Women’s Health. (2024). Endometriosis Fact Sheet. Retrieved from https://www.womenshealth.gov/a-z-topics/endometriosis

  7. Yale Medicine. (2024). Understanding Endometriosis. Retrieved from https://www.yalemedicine.org/conditions/endometriosis

  8. National Library of Medicine (PMC). (2023). Epidemiology of Endometriosis: Prevalence and Challenges. Retrieved from https://pmc.ncbi.nlm.nih.gov/articles/PMC9131783

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