Chronic but not powerless, why your estate plan deserves a seat at the doctor's office

Yahoo

4 days ago

Juggling modern families, demanding careers, shifting politics, doctors' appointments, insurance paperwork, and copays, and everything society throws at us is already a full-time job. Add a chronic condition — like HIV, cancer, multiple sclerosis, or anything that requires ongoing care — and the balancing act becomes something closer to running the gauntlet.
It's a lot. And most people don't get it, especially when your condition is invisible. Or stigmatized. Or both.
But here's the truth I've learned from working with clients living with chronic illness: The strongest among us don't just "push through." They take control — not just of their health, but of their financial and estate plans. Because the minute life gets complicated, the cost of not planning skyrockets.
I've worked with people who've beaten cancer, who live with HIV, juggle therapy appointments and their kids' soccer schedule, all while trying to make sense of their financial goals and dreams. What they have in common isn't just resilience. It's that quiet, sobering moment when they realize: "I need a plan."
That moment doesn't happen in every financial advisor's or lawyer's office. Sometimes it hits when a hospital intake form asks, "Do you have a healthcare power of attorney?" Or when someone close to them ends up in a medical crisis with no documents and no clarity. That's when the gravity sinks in: chronic illness doesn't wait for your financial life to be in order.
And here's the thing most financial professionals won't say out loud: if you're living with a chronic condition, you can't afford not to plan. Not out of fear, but out of self-respect, love for the people in your life, and power over your own story.
Let's start with the part everyone dreads: estate planning.
Most people avoid it because it feels like preparing for death. But if you're living with a chronic condition, it's not about dying — it's about protecting your autonomy while you're alive. If your health situation could ever leave you unable to speak for yourself, you need documents that do the talking:
Healthcare Power of Attorney: Choose someone you trust (really trust) to make medical decisions on your behalf.
Living Will or Advance Directive: Spell out your wishes clearly. Whether it's aggressive treatment or comfort-focused care, this is where your voice lives if you can't speak.
HIPAA Authorization: Make sure the right people — especially your partner or chosen family — can access your medical information.
Durable Financial Power of Attorney: Someone has to pay the rent and manage your finances if you're in the hospital. Choose wisely. (No offense to your cousin with 13 credit cards and a sneaker reselling habit.)
Revocable Living Trust: If you own assets — especially if you're unmarried or estranged from family — this helps ensure your belongings go where you want them to, without court interference.
For many in the LGBTQ+ community, chosen family plays a bigger role than blood relatives. But without legal documentation, the system doesn't care who actually showed up for you when it mattered. That's why these documents aren't just "recommended." They're essential.
And emotionally? This work can be heavy. For those who have faced rejection from family or institutions, it can resurface painful memories. But it's also one of the most potent acts of self-advocacy you can make.
This is about saying: This is who I trust. This is who I love. This is who gets a say.
This isn't about doomsday prepping. It's about giving yourself options, control, and flexibility — so your health doesn't dictate your financial future more than it has to.
Emergency Funds & Cash Flow
Even with insurance, chronic conditions come with unpredictable costs, including copays, travel expenses, and lost income due to time off work. Plan to have:
6–12 months of essential expenses saved
Short- and long-term disability coverage (through work or individually)
A clear understanding of what your insurance does — and doesn't — cover
This isn't paranoia. It's confidence.
Insurance (Yes, It's Still Worth Talking About)
Most people think life insurance is obvious, but disability insurance is also critical if you rely on your income, and most of us do. But if you're managing a chronic condition, you may face exclusions or outright denials. That's frustrating, but not a dead end.
There are still pathways to protecting your family:
Group disability coverage through your employer or professional associations may not require medical underwriting.
Employer-sponsored life insurance — often guaranteed issue and a great base layer.
Life Insurance – many carriers now offer coverage for people living with conditions such as HIV, with recent advancements in treatment.
Survivorship policies if you're partnered and one partner is uninsurable alone.
Leaning on your partner's benefits, primarily if they work for an inclusive employer that allows domestic partner enrollment, even if not legally married.
One HR form could mean access to coverage you wouldn't qualify for on your own.
Rethinking Retirement
Chronic illness can shift your timeline. Maybe you want to retire early. Perhaps you need more liquidity. Maybe you want the flexibility to work part-time at 50 and focus on advocacy, art, or your own damn peace.
Traditional retirement accounts still matter and serve as the foundation. But if you're living with a chronic condition, you might want more flexibility than a standard 401(k) offers. That's where diversification comes in. Think beyond just one type of account. Many of my clients benefit from having a mix of Roth, taxable brokerage accounts, and yes, even the trusty 401(k). The goal is to create options. Because life doesn't always follow a textbook timeline, and your money shouldn't be stuck in one either.
For individuals managing chronic conditions, the Health Savings Account (HSA) is the real MVP — or, to be honest, the GOAT.
If you qualify for one, an HSA is more than just a savings account. It's a triple-threat: money goes in tax-deductible, grows tax-free, and comes out tax-free when used for medical expenses. It's like having a backstage pass to cover the healthcare costs you already know are on the way.
And here's the bonus: after age 65, you can even use it for non-medical expenses without penalty. That flexibility makes it one of the most powerful tools in your financial toolkit, especially if healthcare will always be a line item in your budget.
Many clients I work with want to give back to the communities and causes that have helped them, including HIV research, mental health access, LGBTQ+ rights, hospice care, and housing justice.
That legacy can also be part of your financial plan.
Name a nonprofit as a beneficiary on a life insurance policy, IRA, or 401(k)
Use a donor-advised fund to give strategically during your lifetime
Include charitable bequests in your will or trust
This isn't just about reducing taxes. It's about using your resources to reflect your values. To say: This mattered to me. And I want it to continue.
Planning = Peace
Here's what I've seen over and over again: once the plan is in place, people breathe differently.
There's a lightness. A quiet confidence. A sense of relief that your care, your finances, and your legacy won't be dictated by courts, chaos, or people who don't actually know you.
If you're living with a chronic condition, you deserve more than just medical care. You deserve a plan that sees the whole you — your relationships, your resilience, and your right to decide what comes next.
So go ahead. Schedule the meeting. Sign the documents. Set the plan in motion. Then? Rest. Enjoy what makes you happy. Travel without "what-ifs." Live with confidence.
Because now — finally — you have a plan.
Voices is dedicated to featuring a wide range of inspiring personal stories and impactful opinions from the LGBTQ+ community and its allies. Visit Advocate.com/submit to learn more about submission guidelines. Views expressed in Voices stories are those of the guest writers, columnists, and editors, and do not directly represent the views of The Advocate or our parent company, equalpride.
This article originally appeared on Advocate: Chronic but not powerless, why your estate plan deserves a seat at the doctor's office