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How to Talk to Your Man About Your Autoimmune Disease

How to talk to your man about your autoimmune disease

Do you say what you mean, and mean what you say?   It took years for me to realize that somewhere along the line, I stopped communicating clearly and directly with my husband.  Or maybe I never started.  Regardless, one of my mind blowing self-realizations last year was that I did not use my voice to clearly communicate with my man.  As a result, I decided to dive head first into learning how to communicate with my man about my autoimmune disease. 

Learning to live with an autoimmune disease was tricky enough, but I knew if our marriage was going to survive, I needed to learn how to communicate with my husband clearly.  Fast forward a year later, my man and I are closer than ever.  I am so excited to open up and share in hopes it helps you know how to talk to your man about your autoimmune disease.

Ineffective Communication

It’s not that my man and I never talked.  Sure, we talked a lot.  However, here is an example of how the old me would communicate.

Say, for example, I was at my rock bottom in an autoimmune flare, and realized I needed my man to stay home from work to take care of me and the kids.

The old me would say things like:

“Oh man, I feel terrible.”

“My whole body hurts.”

“It feels like there is a storm going on inside my body.”

“I have a fever.”

In reality, what I was trying to say, or hint at:

“My body feels exceptionally bad today.  It is hard for me to function.  Is there any way you can work from home today?  I need your help.”


Obviously my husband is not a mind reader and never got the message.  The old me would have gotten hurt and upset when my man did not pick up the hint that I needed him to be home that day.  His punishment?  I refused to call him during the day to say hi and check on him.  If he called me, I was rude.    

I still would not communicate why I was mad.  According to the old me, he should know.  Here’s the thing, he had no clue.  He figured I needed space because I felt unwell or he wondered if I may be distraught since I was in a flare.  If I had not called, he most likely assumed it was because I was not feeling well and was sleeping or resting.

Meanwhile, I sat at home, hurt by his actions.  Looking back, I realize my expectations were unrealistic and unfair because how was he supposed to know what I was hinting at in the first place?!

His Versus Hers

During a flare, my mind is filled with thoughts of my how rotten I feel. 

My man’s mind?  Focused on what needs to be done that day at work.  After all, he is trying to take care of me and the kids by being the best he can at work.

In fact, it tears him apart when I am unwell.  I imagine he feels helpless as he watches his wife go from well to unwell to well to unwell seemingly without rhyme or reason. 

Even harder on him?  His innate desire to want to rescue me, save me, and fix me, yet knowing he cannot.  There is no cure. 

Instead, he does what he can. 

He loves me through it in his own masculine way.  In HIS own way.  Not my way.  He is his own person, with his own way of thinking and showing love.  I am my own person with my own way of thinking and showing love.

How is it fair for either of us to expect the other to read our minds or dig through subtle hints to identify each other’s needs?  It is not.  It is not fair to each other, it is not fair to ourselves, it is not fair to our marriage, and it is not fair to our families.

There is a better way.

Open, Clear Communication

It took me years and lots of trial and error to realize that communication starts well before a word is ever spoken.

Open, clear communication, for me, involves first and foremost self-awareness.

Some questions I ask myself:

  • What is it I am trying to communicate?
  • What is it I am directly asking for?
  • Is it a need or a want?
  • What words can I use to communicate clearly and openly?
  • How important is this to me?

His Perspective

Next, I try to see the situation from my man’s point of view, and anticipate any thoughts, questions, or concerns he may have and address them.

This speeds along the communication process, and also allows me to get outside my own head and try to think about the situation from another perspective.

More Than Words

Next, is finding the courage to communicate clearly, openly, and directly with my man, and encouraging him to do the same.

Communication is about so much more than spoken words.

Be mindful of body language – both yours and his.

I find that when I am nervous or uncomfortable, I tend to physically close in on myself.  I cross my arms, and slouch my shoulders.   My husband may interpret my body language as me being closed off and not wanting to be touched by him.  Which is the opposite of what I want.

I want him to touch me, hold my hand, stroke my cheek, and look into my eyes.  As a result, I try to be mindful of my body language and communicate with not just my words, but my body as well.

Turning a Corner

In the example about me feeling unusually unwell and feeling like I needed my man home, the new me would communicate my needs by looking into his eyes, holding his hand, and clearly saying some version of:

“I am feeling exceptionally unwell today.  Much more than normal.  I need to rest as much as possible, and am concerned about being home alone today with the kids.  I am not sure what you have going on in the office today, but is there any way you can work from home to be here?”

Having thought through any questions or concerns he may have, I will add on, “I understand if you cannot.”  I will also have thought through any friends who might possibly be able to help instead.

Even if my man’s answer is no, he cannot work from home, or take the day off, he has a better understanding of where my health stands that day.  Subsequently, he might offer to take my daughter to rock climbing practice after work.  He might offer to make dinner.  He will most likely think of other ways to help and brainstorm ways to get me the help I need during the day.

In turn, I have zero hurt, anger, or negative feelings about the situation because of the clear, open communication.

Full Disclosure

Open and honest communication can be tricky and difficult at first if it is new for you and your man. 

Rebuilding trust takes time. 

Developing the self-awareness necessary to openly communicate can be hard. 

Falling back on old habits of communicating can be tempting.

Identifying and overcoming unique obstacles to communication in your situation can be frustrating.

Developing Self-Awareness

Some tools for developing self-awareness, and learning how to talk to your man about your autoimmune disease include:

  • Meditating.  Meditation helps me find space, quiet fears, and feel peace.  My favorite new way to meditate is using the Headspace app.  I love it for daily guided meditation and tips for improving my practice.
  • Journaling.  Journaling helps me by getting my thoughts on paper.  As I write, my ideas take on more clarity, and I am inspired to know how to move forward in a situation.
  • Questioning.  Asking myself questions helps me clearly identify my feelings, goals, objectives, and any obstacles I foresee.
  • Spending time in nature.  Getting outside and spending time in nature helps to put things into perspective.  It also allows me to think more clearly, and feel an increase of peace.

“Communication to a relationship is like oxygen to life.  Without it…it dies.”

Tony Gaskin

Tips for Open Communication

In summary, here are some tips for openly talking to your man about your health.

  • Be direct.  Avoid hinting at what you want or need.  He may perceive this as complaining and start to shut down.  Let him know if you are simply trying to communicate your symptoms so he knows how you are feeling.
  • Ask for help.  Men usually want to fix things.  Think of one way he can help you, and clearly ask him.  He wants to support you.  However, he may have no clue how to support you.  Offer him ideas.
  • Seek understanding.  Think about your man’s point of view, and try to understand if his answer is no.  Love and accept him anyway.  His answer cannot always be yes.
  • Remember his feelings.  Your man may struggle to express his feelings.  Try to remember, as hard as living with a chronic illness is on you, it is hard on him too.  He has a front row seat to watching the woman he loves most in this world be chronically ill.  On top of that, he cannot fix it.  He is feeling just as much heart break as you.
  • Love him.  Tell him you love him.  Show him you love him.  Your man needs you.  He needs your love.  He most likely is torn up inside about your situation, and wants to know you love him even though he cannot save you from your autoimmune disease.

Cut Some Slack

Marriage is hard.  Communication is hard.  Living with autoimmune disease is hard.  Give yourself a break, and give your husband a break.  Communication is not going to be perfect.  It will take time to learn, to rebuild trust, and to mend old wounds. 

Simply take it one day at a time.  Focus on openly communicating with your man about your autoimmune disease today.  Likewise, as you find wellness, communicate with your man about that as well.  Share your successes.  Celebrate your victories.  Thank him for his support.  Lean on him.

Other posts you may enjoy:

My Story

How I Let My Autoimmune Disease Steal My Laughter

Ugly Cry

Healing With Love

The Emotional Side of Autoimmune Disease

Comments (5)

This is a lovely post. Thanks for recognizing how hard autoimmune diseases can be on relationships… this makes me feel much less alone.

Hi Ali! I am so glad it resonated with you. Thank you for taking the time to let me know. It really is so comforting to know we are not alone as we battle autoimmune disease.

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