red corded phone with text overlay - Building Community for Autoimmune Disease: How to Master the Art of Talking About Your Autoimmune Disease

How to Master the Art of Talking About Your Autoimmune Disease

Frank Emotional Healing, Living Well with Autoimmune Disease Leave a Comment

red corded phone with text overlay - Building Community for Autoimmune Disease: How to Master the Art of Talking About Your DiseaseI have a BIG mouth.  And it has gotten me in trouble at work more than once.  My manager tells me… “Frank, you have a ton of potential, but you need to learn how to play the game.”

First of all, and I understand that I’m already off topic (good start), I don’t want to play “the game.”  Politics (i.e. playing the game) should stay in Washington.

I would rather say what I want to say and stop having people get offended at how I deliver facts.

What I’m trying to say is, why can’t we just say what we want to say?  Why does it always feel like every time we try to engage in innocent conversation, we are simultaneously tip-toeing on glass shards?  And is it just me, or is this especially true when talking about your autoimmune disease?

Maybe you are like me (a loudmouth), or more likely, you are nothing like me.  You might be quiet, reserved, not open about certain aspects of your life/beliefs, and that’s great!  If we were all the same this world would be even messier – there has to be balance.

But if you have a chronic illness like an autoimmune disease, talking about it can be powerful.

Just a few of the benefits are:

  • Connected-ness with others, especially when autoimmune disease consumes your entire life
  • Feeling heard, getting things off your chest, feeling understood and acknowledged
  • Helping others struggling with similar issues
  • Building awareness of disease and hopefully preventing someone else from future suffering

Then again, it can also create stress.  Stress triggers inflammation and inflammation causes autoimmune flares!!

And what is it exactly that causes the stress from these autoimmune conversations?  Some common ones that I (and many others) have experienced are:

  • Feeling rejected when people don’t want to listen, especially when they say “it’s all in your head” or that you’re just making it up “for attention.”
  • Family members (possibly your closest companions) not giving you the emotional support you need, or are just telling you to “perk up & get better” like it’s that easy
  • Anxiety from repeatedly being shunned or let down during previous attempts to discuss your disease

So, given all the reasons for stress (a.k.a. inflammation)… Let’s try to avoid this, shall we?

To make these dreaded conversations easier, I came up with 3 simple ways to never feel stressed, ashamed, nervous, sad, or any other negative feeling when discussing your disease.

1.  Know Your Disease

Sadly, I don’t think people are very interested in what I have to say.  Not sure if it is my tone of voice, my lame stories, or some imaginary eye twitch that they can’t stop focusing on (at least I think I’m making that up)…

So, when it comes to sharing about my disease and lifestyle, I fall into the same trap. “Do they really care?” Or, “Are they even listening?”

The answer to this question should be – “It doesn’t matter.”

Now, let me be clear… I don’t suggest talking aimlessly about your disease just for the sake of saying it.  The conversation does need to be mutual.  It is the only way to get the reciprocation that we are seeking during the conversation.

But these doubts of wondering whether we are interesting enough to share our story are real.   It is crucial not to open yourself up to the sort of doubts like:

  • “I talk about my disease too much.”
  • “I’m not interesting.”
  • “Who really cares anyway?”

If you think this way, then I can guarantee you will lack the confidence that you deserve to have in these situations.  So, instead of worrying, I suggest you learn the best tactic for engaging autoimmune disease conversations…

Know your disease.

Other people probably don’t know anything about it.  And that is awesome!  Do you know why?

Because autoimmune disease, while awful, painful, and embarrassing at times… is also very interesting.

It’s not every day that people hear about a body that attacks itself.

I have Celiac Disease.  Some people assume they know what it is from listening to media sources, and that all I have to do is stop eating bread (gluten).  Then they say: “But man that really sucks!  I could never do that.  I love bread.”

Well, yes, this is true, gluten is the devil in protein form.  However, they probably don’t know what an autoimmune disease even is.  Gluten may be the ultimate rain on my parade, but it isn’t the disease, which opens the door to share and explain.

Start from the top.

So, when the opportunity presents itself to talk about your disease, you dazzle them with the basics…

“My immune system has been triggered by some (enter reason if you know, or simple mysterious disclaimer if not) environmental trigger, which means it is overactive and usually turned on.  The result, my body is attacking itself!  Pretty crazy, huh?”

If they want to know more, they will ask, if they don’t then you can simply switch the topic to the weather.  It’s important not to be mad if someone doesn’t want to listen or hear more about it.

People who don’t have an autoimmune disease, don’t have a clue what you are dealing with.  And empathy DOES NOT grow on trees.  Sure would be helpful sometimes though, right?  Plus, some people are just downright awkward when you bring up anything personal.

But for the people who do show some interest – knowing about your disease gives you a conversation starter and a topic that is sure to intrigue.  People rarely hear about explosions in the bathroom or corn-induced eczema!

Plus, you can get into the details if they want.  Pro-tip: keep them extra interested by embellishing a little, if you are really looking to share your story or current struggles.

Just be confident.  Know the ins and outs of your disease, what makes it worse, how to improve symptoms, and more…  You get the dual benefit of knowing how to manage it (personal bonus) and being able to teach others (bonus for the listener).

2.  Know Your Audience

This step is probably the one that comes with the most stress.

Consider this scenario, you are talking to a family member and you aren’t sure how much to tell them about your disease.  Usually this is because there is an underlying family “thing” or some unspoken rule that makes you feel pre-judged, or are hesitant to share deep secrets (this is so common).

Clearly this situation will create some kind of stress, and possibly tension in relationships that can literally last for years.

Unless, you know your audience.  Family, doctor, co-worker, random stranger, they all come with little nuances of stress build-up in our minds.

Set expectations beforehand and learn to adapt.

The stress from interactions with people can be improved by setting expectations, because it takes the guesswork out of how much or little you can share in the moment.  If you know that Aunt Selma gets squirmy anytime someone mentions the words autoimmune and disease in the same sentence, then stick to surface-level updates, or no update at all.

Not everyone is sympathetic/empathetic, or interested in hearing about real aspects of your life.  And this is OK.  Knowing your audience, and how much you can share with that person before the conversation even starts, makes things simple.

And simple is usually less stressful.

There ARE people who will listen… it’s just not going to be everyone, and unfortunately, it may not be the people closest to you.  I know firsthand how hurtful this is, but it’s unfair for us to expect people to self-reflect and change their behavior toward us.

Instead, if you want to master talking about your disease, consider changing yourself and how you approach conversation (more on this later).

Understand how other people (especially those close to you) tick, so you can share information that you NEED to share, in a way they can handle.  I know you are trying to show people what you need, but sometimes coming from a different angle is what it takes to get that emotional support you’re looking for.

I talk about my autoimmune disease differently with my doctor, my dad, and my mom… they are all different, have varying levels of knowledge, compassion, etc.  And sometimes I wish I could talk openly with all of them about my daily battles, but that’s just not the case… which is why it’s important to…

Find your rock.

I have used this exact term in a post I recently wrote about how to successfully change your diet.  Oddly enough, finding someone to help out and keep you accountable for all of your diet changes fits this role too!

It makes sense too.  We are pack animals.  Very seldom can a person thrive on their own.  Even the greatest introverts need human companionship.

So, my final recommendation for knowing your audience is to find at least one person that can be your rock.  Your go-to person.  Find someone (or a support group) that you can share your most embarrassing, silly, or sad things with and feel comfortable and confident that you will be heard.

Having someone that fits this criteria means – even if all your autoimmune-conversation tactics fail, at least you have one person in your audience that sticks around for the encore.

(If you feel that you may need professional support, you can use this tool to find a chronic illness counselor.)

3.  Know Yourself

This is probably the most important out of the 3 steps.  Taking the time to reflect on your actions, and how you communicate helps you respond to other people’s reactions, words, and behaviors without feeling unraveled when a conversation goes south.

A skill like this takes time and practice, though.  But as you grow, a normally difficult health-update with your mother becomes a little easier.  When she begins talking over you, thinking she knows more about your disease than you do, with no education on the subject, you can better navigate your own emotions.

No more ending the conversation feeling deflated or angry.  Now you can course correct in real-time, hopefully giving her an opportunity to better understand your situation.

Or, you might finally understand that she simply might not be the best person to share such sensitive information with, and move on.

Build Your Armor

I think we put so much stock in what other people think that we lose sight of the only opinion that actually matters – our own.

No one lives with you longer than you – not even spouses, parents, or children.  But it seems like the hardest person to be comfortable with is… yourself.  Which brings me to this issue of confidence, I mentioned it earlier.

Confidence starts inside, and the best way to cultivate it is to reflect on what’s going on:

  • Your emotions
  • Feelings towards others
  • How you feel physically, mentally, spiritually
  • Realizing why and how you react/act in different situations

Without reflecting, you’re blind of what makes you tick.  And not knowing yourself makes you vulnerable to being overcome by the unexpected.  Then comes the stress, the inflammation, and possibly even broken relationships.

And I thought we were trying to avoid all of this…

So, remember… you can’t control the way that people respond, but you can control how you deliver and react.  THAT is the key to being able to talk about your autoimmune disease with anyone.

My Parting Words of Compassion

If there is anything you take from this post, let it be this:

Remember how it feels when someone is dismissive of your conversation, or how it feels to think that no one understands your disease.

Harness these feelings.  Use them to become a more compassionate listener, a better friend, a thoughtful spouse.  When someone sits down in front of you, and you can see the hurt in their eyes, treat them the way that you wish someone would treat you when talking about your autoimmune disease.

The best answer… the best reaction to any conversation, good or bad, is kindness.

What are your tips for talking about your autoimmune disease?  Share them by leaving a comment below!

red corded phone with text overlay - Building Community for Autoimmune Disease: How to Master the Art of Talking About Your Disease

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