Disclaimer: This blog post is based on my personal experiences and insights as the spouse of someone with a chronic illness. While I aim to provide helpful information and resources for those in similar situations, it’s important to remember that every journey is unique. The tools and strategies that have worked for me may not be a perfect fit for everyone.
The information in this post is not intended as a substitute for professional medical, legal, or financial advice. Always consult with qualified professionals regarding your specific circumstances and needs.
When your spouse is diagnosed with a chronic illness, it can feel like your world has been turned upside down. Suddenly, you find yourself in uncharted territory, overwhelmed and uncertain about the future. But don’t worry, I’ve got your back! Consider this your “Chronic Illness Starter Kit,” a toolkit filled with resources and coping mechanisms to help you navigate the challenges ahead while maintaining your sanity.
Lemony Snicket once said, “Everyone should be able to do one card trick, tell two jokes, and recite three poems, in case they are ever trapped in an elevator.” Well, think of this starter kit as your survival guide for the metaphorical elevator you’ve found yourself in. You may not know how long the journey will be, but being prepared will make all the difference.
Practical Support
An On-Call Babysitter: If you have children, line up a reliable, on-call babysitter you trust to step in when appointments, flare-ups, or emergencies arise. This support system will alleviate stress and ensure your kids are well-cared for. Your on-call babysitter could be a friend, relative, or someone from the neighborhood who’s always ready to lend a helping hand. And if you’re in a pinch, don’t forget that many areas have babysitting services or agencies that specialize in last-minute needs – because let’s face it, chronic illness can be unpredictable! Having a dependable childcare plan in your back pocket will give you one less thing to worry about.
A Good Organizational System for Medical Records: When you’re dealing with a chronic illness, medical records can pile up quickly. From doctor’s notes and test results to treatment plans and medication lists, the sheer volume of paperwork can be very overwhelming. That’s why implementing a good organizational system is a must-have in your chronic illness starter kit.
Whether you prefer a physical binder or a digital filing system, the key is to keep all your medical records in one easily accessible place. Use dividers or folders to separate different types of documents, such as lab results, imaging reports, and specialist visits. If you opt for a digital system, create clear and logical folders on your computer or use a cloud-based storage service for easy access from anywhere.
Having all your medical information at your fingertips will save you time and stress when you prepare for appointments, fill out forms, or track your spouse’s progress. Plus, if you ever need to switch doctors or seek a second opinion, you’ll have everything you need ready to go.
I’ve created a free digital tracker to help you stay organized and on top of your spouse’s medical information. You can access it by clicking the link below:
Free Chronic Illness Spouse Digital Tracker
A Crockpot and/or Instapot: Let’s face it, when you’re dealing with a chronic illness, there are days when just getting out of bed feels like a Herculean task. The last thing you want to do is spend hours slaving away in the kitchen. That’s where a trusty crockpot or Instapot comes in – your new best friend in the world of low-effort, high-reward cooking.
On those days when your energy levels are running on empty, toss some ingredients into your crockpot in the morning, and let it work its magic while you are at work and/or are focusing on taking care of yourself and your family. Come dinnertime, you’ll have a delicious, wholesome meal waiting for you, without having to lift a finger. Plus, the comforting aroma of a slow-cooked meal wafting through your home is like a warm hug for your soul.
And if you’re in the mood for something a little faster, the Instapot’s got your back. This multipurpose marvel can whip up a healthy, tasty meal in a fraction of the time, so you can spend less time in the kitchen and more time snuggling on the couch with your loved ones.
One of my go-to favorites is Crock Pot Tuscan Chicken from Easy Family Recipes if you are looking for an idea. Even my picky daughter loves it!
Frozen Pizza: Okay, let’s get real for a moment. Even with the best intentions and the most reliable crockpot, there will be days when just the thought of cooking feels like climbing Mount Everest. You’re exhausted, your spouse is having a rough day, and the kids are running around like tiny tornados. That’s when you’ll be thanking your lucky stars for the secret weapon in your freezer: the humble frozen pizza.
Sure, it might not be the most gourmet meal on the planet, but when you’re in survival mode, a piping hot pizza loaded with gooey cheese and your favorite toppings can taste like pure heaven. Plus, it’s usually a kid pleaser, which will bring you a moment of peace.
So, go ahead and stock up on those frozen pies – and don’t feel guilty about it for a second. Think of it as an act of self-care, a way to give yourself a break when you need it most. And if anyone raises an eyebrow at your frozen pizza stash, just tell them it’s part of your chronic illness starter kit.
Educational Resources
Information on the Diagnosis: Dive into reputable sources like the National Institute of Health, Center for Disease Control, Mayo Clinic, and disease-specific organizations for comprehensive information on the chronic illness. These sources offer detailed information on symptoms, treatments, and self-management strategies. Be cautious of personal blogs, social media posts, and websites promoting miracle cures or lacking proper credentials, as they may provide inaccurate or misleading information.
Financial and Legal Resources
Get your ducks in a row by exploring financial planning tools, budgeting apps, and resources for managing medical expenses. Understand your health insurance coverage, research disability benefits you may be eligible for, and consider creating legal documents like a Power of Attorney for healthcare decisions and a Living Will to ensure you and your loved one’s wishes are respected.
The Social Security Administration states you should apply for SSDI as soon as you realize that the chronic illness is impacting the ability to work, even if it’s not something initially planned for or hoped to pursue. For a deeper dive into navigating the world of SSDI, check out my post “Navigating the SSDI Application Process with a Chronic Illness: A Comprehensive Guide“.
When it comes to health insurance, finding the right coverage can be a daunting task. If you’re feeling overwhelmed and need some guidance, I’ve got you covered. Head over to my post “How to Choose the Best Health Insurance Plan for Your Spouse with a Chronic Illness” for tips and tricks on selecting a plan that works for you and your spouse.
Emotional Well-being
Being a chronic illness spouse is emotionally challenging to say the least. So here’s an introduction to the essentials for an emotional well-being starter kit. These tools will help you lay the foundation for maintaining your emotional health while supporting your loved one. Remember, taking care of yourself is a non-negotiable.
Support System: Listen up, folks – a strong support system is like having a secret weapon in your chronic illness toolkit. Don’t underestimate the power of surrounding yourself with people who’ve got your back through thick and thin.
I’m talking about those ride-or-die friends who will lend an ear when you need to vent, offer a shoulder to cry on when things get tough, and show up with a casserole (or a bottle of wine) when you just can’t even. The family members who will rally around you and your spouse, offering love, encouragement, and practical support. And let’s not forget about the professionals – therapists, counselors, and support groups who can provide guidance, validation, and a safe space to process all those big feelings.
Speaking of support groups, the Well Spouse Association has a fantastic list of resources on their website. So, if you’re looking to connect with other folks who get it, definitely check them out. And don’t sleep on your religious or spiritual community – they can be an incredible source of comfort, support, and practical assistance during this time.
Remember, asking for help isn’t a sign of weakness; it’s a sign of strength and wisdom. You don’t have to carry the weight of this experience all by yourself – let your support system share the load.
Having a Therapist: Investing in therapy, both as a couple and individually, can be a total game-changer. A therapist is like a superhero sidekick, providing an objective, non-judgmental perspective and helping you process all those complicated feelings that come with being a chronic illness spouse. They’ve got your back with invaluable guidance as you navigate the unknown and can help you figure out how to tackle this journey with your partner. Don’t be shy about seeking professional help – it’s not a sign of weakness, it’s a sign of being a total boss!
If I could turn back time, I would have started couples counseling faster than you can say “chronic illness.” I consider my marriage rock-solid, but let’s be real – a life-altering crisis can bring out miscommunication and trigger crisis mode faster than you can say “pass the tissues.” Crisis mode is when stress levels are through the roof, emotions are running wild, and making decisions feels like trying to walk a tight rope blindfolded. It’s a recipe for reactive behavior, misunderstandings, and strained relationships.
Books and Music: Sometimes, the right book or song can be a powerful source of comfort and inspiration. When things get tough, I turn to my “crisis book” – Eckhart Tolle’s “The Power of Now.” This book helps me find peace in the present moment, no matter how challenging life gets. And when I need a dose of resilience, I look to Jerry White’s “I Will Not Be Broken,” which offers practical advice for staying strong when things get tough.
Music is another essential tool to have in your emotional well-being toolkit. Create a playlist that covers all the bases – uplifting songs to boost your mood, calming tunes to help you relax, and even a few “angry” tracks for when you need to let it all out. Having a diverse musical selection at the ready means you can quickly shift your mindset and find a moment of peace or release whenever you need it.
A Hobby to Express Yourself: Having a spouse with chronic illness can easily consume your identity. That’s why it’s crucial to find a hobby or creative pursuit that allows you to express yourself and maintain a sense of individuality. Whether it’s painting, writing, gardening, or any other activity that brings you joy, having a hobby can provide a much-needed outlet for your emotions and a way to recharge your batteries. It’s not selfish to prioritize your passions – it’s an essential part of self-care.
My go-to hobbies are photography and blogging. When my husband was first diagnosed photography was my escape, even when I only had time to just think about it. Blogging came later when I needed a place to let it all out and find a community that understands. As it turns out, it’s also pretty fun.
Self-Care Essentials: Let’s be honest – there will be tears. Lots of them and often when you least expect it. Embrace the inevitable with self-care essentials like waterproof mascara (if you are into that), tissues, and Visine.
But self-care goes beyond the physical – it’s about prioritizing your overall well-being. Make time for mindfulness practices, relaxation techniques, exercise, and healthy foods. These small acts will help you build resilience and maintain a sense of balance on this wild and unpredictable ride.
Read my article “25 Very Easy Self-Care Activities You Can Do in 5 Minutes or Less (Includes a free printable!)” for a list of go-to self care ideas. I also love the website thisissand.com for zoning out and calming down.
Relationship and Communication Tools: Chronic illness can strain even the strongest of relationships. That’s why it’s super important to arm yourself with tools to foster open dialogue, active listening, and healthy communication. Learn to express your needs clearly and compassionately, and make space for your partner to do the same. Find ways to maintain intimacy and connection, even if it looks different than before. When disagreements arise (and they will), approach them with a spirit of compromise and a commitment to finding solutions together. Remember, you’re a team – and to keep this team running you’re going to need to work together effectively.
Resources for Kids
Let’s not forget about the little ones in this journey – they need support too! Chronic illness doesn’t just affect the person diagnosed; it can have a big impact on the whole family, especially children. That’s why it’s essential to have some resources on hand to help your kiddos navigate this new reality.
Involve the School: First things first, make sure to let the school know what’s going on. This way, teachers and staff can be more understanding and accommodating if your child is feeling extra sensitive or having a tough time. Don’t be afraid to reach out and ask for help – that’s what they’re there for!
Here’s an email template you can use to email your child’s teacher:
Hi [Teacher’s Name],
I hope you’re doing well. I wanted to let you know about something going on at home. Over the past few months, things have been a bit up and down with my [husband/wife/partner] [Name]’s health. We recently found out that [name] has a chronic illness, so this is going to be a long-term thing for us.
As we adjust to this new normal, there might be some changes or disruptions at home. We’ve talked to [Child’s Name] about it in a way that makes sense for [child’s] age, but it’s still a lot for [child] to take in. If you notice [Child’s Name] seems distressed, is acting differently, or having trouble focusing, could you please let me know?
We’re doing our best to keep things as stable as possible for [Child’s Name]. Your support and understanding mean a lot to us. Feel free to reach out if you have any concerns or questions.
Thanks so much,
[Your Name]
Sending an email to your kids’ teachers is a great way to keep them in the loop without having to have the same conversation over and over again. Plus, it gives you a chance to provide some context and express your family’s needs in writing.
Feelings Chart: Another helpful tool is a feelings chart. This simple visual aid can help your little ones identify and express their emotions, which can be especially challenging when a parent is facing a chronic illness. Encourage them to point to the emotion they’re feeling and talk about it openly and honestly. Strong for Life has a few free printable charts to choose from.
Have an Open Line of Communication: When a parent is diagnosed with a chronic illness, it can be difficult for children to understand and process their emotions. They may have questions, fears, or even misunderstandings about what’s happening. That’s why it’s crucial to maintain an open line of communication with your kids.
If you’re looking for more guidance on how to talk to your kids about a parent’s chronic illness, check out my post “6 Essential Considerations when Talking to Children about a Parent’s Chronic Illness“. It’s packed with practical tips and advice for having those tough conversations in a way that’s age-appropriate and sensitive to your child’s needs.
From choosing the right time and place to have the conversation to using clear, honest language and validating your child’s feelings, this post covers all the essential considerations. I also discuss the importance of reassuring your children, letting them know that they are not responsible for the illness, and that it’s okay for them to continue living their lives.
Remember, every child is different, and there’s no one-size-fits-all approach to these conversations. The key is to create a safe, supportive space where your children feel comfortable expressing their thoughts and emotions. By keeping the lines of communication open and being responsive to your child’s needs, you can help them build resilience and cope with the challenges that come with having a chronically ill parent.
Moving Forward
This starter kit is just the beginning of your journey. As you navigate the ups and downs of chronic illness, remain open to adjusting and adding to your toolkit as needed. With the right resources and support, you and your spouse can face this challenge together, one day at a time.
Remember, taking care of yourself is not a luxury, but a necessity. You can’t pour from an empty cup, so make sure to prioritize your own physical, emotional, and mental well-being. Don’t be afraid to ask for help when you need it, and lean on your support system when things get tough.
It’s also important to celebrate the small victories and find joy in the everyday moments. Chronic illness may change your life, but it doesn’t have to define it. Look for opportunities to create new memories, express gratitude, and cultivate a sense of hope and resilience.
I’d love to hear from you! What strategies, resources, or tools have you found helpful in your own journey as the spouse of someone with a chronic illness? Share your experiences and insights in the comments below, and let’s support one another in this challenging but ultimately rewarding journey. Together, we can build a community of understanding, encouragement, and empowerment.
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