two rings on bible with text overlay - Building Community for Autoimmune Disease: How to Support a Chronically Ill Spouse

How to Support a Chronically Ill Spouse Who Has Autoimmune Disease

Frank Emotional Healing, Faith, Living Well with Autoimmune Disease 2 Comments

two hands holding with text overlay - Building Community for Autoimmune Disease: How to Support a Chronically Ill SpouseDid you know that people who write on blogs aren’t perfect?

Take me for instance, I screw things up all the time, especially when it comes to my home life.  No one does everything right!  Even if it seems that way.

Imperfections aside, I still write about things I believe everyone should strive for.  And in this case, I really want to share how to become the absolutely, most dependable, supportive, and insanely awesome spouse you can for your autoimmune diseased counterpart.

In order to do this, it starts with the basic of basics.

1. Appreciate what you signed up for.

When you got married (and made a covenant with God and your spouse), you signed up for EVERYTHING that comes with it.  Remember that in sickness and in health part?

It starts with the honeymoon and getting puked on by your partner after being food-poisoned (yes, this happened to me… on my honeymoon), to the daily sensory overload caused by tiny, unstable humans that don’t stop crying and demanding food, and everything in between.

Of course, there’s plenty of good stuff too!  But for the purposes of this post, let’s hone in on the challenges of marriage – because similar to autoimmune diseases, there are many blessings, but a lot of hardship.

So, in order to navigate the winding waters of marriage in today’s society, while also supporting a chronically ill spouse, we lead off with the number one pitfall of all people (married or not).

Communication 

Social media, texting, and living in a cold climate 8 months out of the year (like I do), makes for painful/awkward face-to-face communication.  We are trapped in our heads so much that it becomes scary and uncomfortable to actually use our mouths to communicate.

When you’re married though, it is mission critical to open up!  And when battling chronic illness, knowing what’s going on with your spouse and offering them kind words is basically a requirement.

Talking helps you know when to step in if they need relief.  Like knowing when to take over a chore or task that they are struggling with because of their exhaustion or pain.

Plus, talking gives you the opportunity to harness your inner empathy.  Asking questions shows your spouse that you care, and are interested and acknowledging their situation.

Take your shoes off and put on your husband or wife’s chronically ill shoes once in a while.  Walking in those tattered shoes is tough, so learn to understand their challenges.

And it goes both ways!  There are still two people involved.  Communicating your thoughts, feelings, and emotions increases the strength of your bond.  Both of you will be tuned in to what the other is feeling.

The gist is, autoimmune diseases (or chronic illness) can be frustrating, rollercoaster-y, and incredibly lonely.  Make sure the ride isn’t so rough by greasing the bearings and talking to each other when you or your spouse need support, feel down, and even when you’re happy!

Respect their decisions, but don’t just roll over.

As I’m sure you know, marriage is… complicated.  Simply, some days are better than others.  Moods change and feelings can too.

But one thing that can’t change is respect for your spouse.  Imagine having to live with you all the time… See what I mean?  Give them lots of respect.

Teasing!  I’m certain you’re a dream to spend every day with.

But during the tough times of life, or during autoimmune flares, things can get especially dicey.  Your spouse might do something irrational, or decide that it’s time for a crazy intervention like removing all sugar!

Well, in cases like this you should do two things.  Respect their decision and support them (especially by participating yourself).  But not blindly.  Don’t just roll over and be a yes wo/man.

Here’s a simple example of how to do it.

Let’s use the sugar example since it hits close to home for all of us Americans.  It starts like this: Anna says she is cutting out sugar from her diet.  Cold turkey.

My response: “Why would you want to do that?  Did you read that it could help with your Lupus?”

Anna: “Yes.  It can be really beneficial for my gut health and reduce overall inflammation in my body by not having all of the insulin spikes, etc.”

My response: “Oh, wow.  That does sound like a good thing.  Where did you read it?  Can you send me the article?  I think I’ll cut out sugar too!”

See what I’m doing?  I am engaged and supportive, while also benefiting from the conversation since I will be healthier by cutting out sugar too.

I’m not just blindly saying yes, though.  I plan on actually reading the article or at least asking enough questions to fully understand her position, because I don’t want to be supportive just for the sake of doing so.

Also, if the article turns out not to make sense to me, it is my responsibility (as a supportive husband) to let Anna know that this intervention might not be right for her.

As I mentioned, being married to a chronically ill person comes with challenges.  So, do yourselves a favor – talk to each other, and support each other without just saying “yes” all the time.  I assure you, you will be healthier, happier, and usually a little smarter too.

Marriage isn’t just a promise to your spouse, though.  You also signed a spiritual contract with God.  And in the case of being married to a person with autoimmune disease, fortunately you get to lean on this third leg of your relationship: God.

2. Prayer

Remember to PRAY for your spouse if they are ill.  Prayer is one of the best ways we can connect with Jesus, and he asks us to do it often.

Praying for something specific, especially if it has pure intentions should be common practice.  So, if your partner is chronically ill, just pray!  And pray… and pray, and pray (and don’t ever stop).

Plus, you get to build your relationship with Jesus, and your spouse gets the bonus of God’s grace – whether that be help to weather the storm, or healing.

Which brings me to my next point.

Pray Together

While this one might seem intuitive.  It isn’t the same as praying solo.

If you and your spouse decide to pray together, and I hope you do, you should ask for an understanding of why God has BLESSED your spouse with their disease.  Why blessed?  Because there are so many lessons to be learned beneath the surface of chronic illness struggles.

But even if you never get a clear understanding, know that God only gives us what we can handle.  If he chooses your husband or wife to suffer, he knows they have the strength to be an example for others.

What an honor!  Praying together is particularly powerful too.  Since your marriage is a covenant with God, joint prayer is the closest you can be with him (as a couple).

So, utilize this superpower and pray fervently to help you understand and learn about the disease.  Ask God to reveal how he wants you to help others and yourself, and for intense strength to shape this world into the paradise we all hope for.

And as God fulfills your prayers, pay special attention to the learning portion.  Because that is what the next section is about!

3. Learning

I’m not saying God has to literally give you all the answers, but praying can help open doors to new solutions to your questions (as a couple).

But when it comes to how YOU can support your spouse through learning, there are four primary ways to do it:

  • Learn about the disease: Helps you to anticipate your spouse’s needs, and how to better help them to figure out next steps for healing.
  • Learn about the treatments: Search for treatments that best suit your spouse.  In our case, we personally believe that autoimmune disease is triggered by something environmental, and drugs don’t fix that.  If your spouse has a similar mindset, then start looking at folks like Functional Medicine Practitioners, and leaning on naturally healing interventions.
  • Learn to cook: Regardless of whether or not you think natural remedies are the way to go, it is an undeniable fact that diet plays a MASSIVE role in autoimmune disease support.  Men usually struggle with this the most, so if your wife needs to make a diet change, suck it up and do it with her.  Sorry, but guys bailing for not being allowed to eat fast food and pound insane amounts of protein every day is just sad.  Give it a month and you’ll never go back to eating poorly again.
  • Learn about YOUR health: Got any ailments?  Random symptoms?  Mood swings?  Learn about what they mean and how you can take control of them.

I’ll elaborate on this last point a little more.  When I learned that corn triggered my eczema and some other intestinal issues, Anna pulled it out as well (look at that support).  After she stopped eating corn some of her Hashimoto’s symptoms diminished too!

Point being, you can learn from each other.  In our case, we both have autoimmune diseases, but that doesn’t mean you can’t find missing links in each other’s health if only one of you is ill.

After all this, you should have a good understanding of your spouse’s disease and hopefully how to give better support.  So next you will want to do the following:

4. Set expectations, and take care of yourself.

You know, I probably haven’t given you enough credit.  I bet you actually do a bunch of the things I’ve already mentioned, really well too!  But, if you’re like me, you might be sacrificing your own health to make sure that your spouse is fully cared for.

Before you go any further, make sure you dial in your own health plan.  I don’t mean you have to completely ignore your partner now, but at least pump the brakes so you get your diet, sleep, and stress levels where they need to be.

Otherwise, you will be doing an awesome support job, then WHAM!  You crash.

Can’t have that y’all.

Once you are taken care of, you can pick right up where you left off!

Setting Expectations

This topic aligns with taking care of yourself.  Autoimmune disease takes a heavy toll on the body, because the immune system is constantly attacking it.  Not exactly a recipe for optimal energy.

With this idea of limited energy in mind… set expectations.

Consider having 4 kids, each with 4 commitments (hockey, soccer, etc.), plus school, friends, and still trying to function as a healthy family.  In smaller doses these things are great, but when compounded like this, they become an unhealthy pile of stuff.

We all want to give our children and spouse everything we can, but having an autoimmune disease means we have to be more selective and maximize our opportunities.  Don’t think this means anyone is missing out either.

Quality over quantity!  Life’s goal isn’t to stay as busy as possible.  It is to stay active in a healthy and God-fulfilled way.   

Basically, when it comes to supporting your husband or wife, sit down together (or as a family if your kids are older) and talk through the priorities of the seasons.

This way, your kids still get to play their favorite sport (and not burn out), but also be home for dinner every night, and be ready and excited to be with Jesus on Sunday!

I can really sense the teamwork between you and your spouse beginning to blossom!  Which is good, because this next one might seem a little strange at first, but you will see what a difference having a strong team member will make.

5. Treat the disease like you are running a business.

Yes.  Soak it in, feel the confusion building, NOW… ask your question.  Frank, what are you talking about?!

I’ll tell you!  Everything I have mentioned so far has led to this one topic.

  • Strong communicationusually helps in a business setting.
  • Respecting someone’s decision but pushing back when appropriate? That is just learning how to negotiate!
  • Prayer – I mean… God should be involved in everything you do, especially business
  • Learning about the disease – just another way of saying market research.
  • Setting expectations, and maintaining health – also known as work-life balance, and establishing priorities.

See?!  I told you.  Learning how to expertly support your autoimmune diseased spouse is the same thing as running a business – one of health, teamwork, and compassion!

Now you just need to apply these general principles to more specific tasks.

Hold Regular Meetings

You know a great place to have family meetings?  Right at the dinner table.  You’re all together.  You have at least an hour of dedicated time.  There is food – paramount for every successful meeting.

It’s basically meant to be!

So, reflect on the day and then use the rest of the mealtime for running through the day-to-day operation of the “company” (your spouse’s autoimmune disease).  But what sort of things should you even cover?

For one, any new findings (from the learning section).  But for more businessy talk, you should…

Set Goals

Anna and I like a system called the 12-week year.  It breaks the year up into smaller chunks (of 12 weeks), so you don’t run into the same problems that come with New Year’s resolutions:

Total failure.

Instead, use an approach like the 12-week year (or something comparable) to hyper-focus your efforts for things like healing strategies, exercise regiments, extracurricular planning, and anything else that will fit.  In fact, it’s the perfect time to make a personalized autoimmune healing protocol.

Remember not to overexert, and use the focused timeframe to set priorities. Some other goals might be:

  • New diet/diet changes
  • Exercise routines
  • Finding a Functional Medicine Practitioner/new doctor
  • Going on vacation
  • Preparing for a new home/big purchase
  • Preparing for a new child

Setting goals will help reduce the stress of having so many decisions to make.  And boiling your goal-periods down to smaller chunks will help you and your spouse focus on what is most important and to actually execute.

Set a Budget

Can’t run a business without a budget.  If your team decides to approach battling an autoimmune disease like Anna and I, you will lean towards natural interventions.  What does that mean?

It means you will need to account for things like:

  • Organic, specially prepared/grown/raised foods
  • Non-toxic cleaning products
  • Non-toxic toiletries
  • High quality supplements
  • Doctor visits
  • Medications (like thyroid hormone supplements)

I keep mentioning focus and prioritization, setting a budget for “the company” allows you to focus on being healthy. Regaining your spouse’s health should be the purpose of running the business.

Without a budget, you would just spend and never really consider why you were making certain decisions, or purchases.  Tracking everything keeps it right in front of you and lets you prioritize effectively.

But running a company can be stressful, so make sure your team does one thing above all else…

Have FUN!

The love of your life has an autoimmune disease.  In some cases, like those with things like Scleroderma or Lupus, someone’s life could be at stake.  But a diagnosis doesn’t mean life is over!

Instead, take this challenge as God intends it.  Take control!  Look that disease right in the face and tell it NO MORE!  You and your spouse are teaming up to kick this thing right to the curb.

How you do it is ultimately up to your husband or wife, but understand that you play a crucial role in their success.

And with all this battling and supporting, take the time to look your spouse in the eyes once in a while.  Love them with everything you have and enjoy every bit of marriage and the life you share.

I’m being sappy, but why not!?  You share a path that few get to experience – a challenge that has a strong chance of being overcome with divine teamwork and love!

So… be supportive (like I know you will) and HAVE FUN kicking that autoimmune disease’s… you know.

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two hands holding with text overlay - Building Community for Autoimmune Disease: How to Support a Chronically Ill Spouse

 

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