The Surprising Trick I Use When People Don't Understand My Illness


I hear it a lot. And I’ve experienced it myself. “My (friends/family/husband/wife/kids) don’t understand my fibromyalgia!” Or my multiple sclerosis, or rheumatoid arthritis, or (insert chronic illness here).

It’s normal to feel pain and hurt in the face of this lack of understanding about our chronic condition from others. And it happens most often with invisible illnesses like fibromyalgia. I completely get the confusion from feeling like they “don’t trust us” and “don’t believe us.”

“So what can I do to make them understand?” I’ve been asked. 

My answer?

Nothing.

That’s right. Nothing. Why?

First, let me tell you the story of how I came to this understanding.

Back in late 2007 I was desperate to find a way to make my then-husband understand why I had to leave our marriage. I tried over and over to explain all of the complex factors at play so that he would understand why I was causing this pain to him. (And to me.) I tried explaining that coping with all of this was exacerbating my fibromyalgia and I needed, wanted, dreamed of getting back some degree of control over my health. I was so tired of feeling stressed. 

It seemed the most natural and important thing in the world — wanting him to understand — and it was egged on by his “but why?” queries. I had spent 10 years with this man, for whom I still had a degree of grudging respect, and I wanted him to get it. To get me. 

But it didn’t matter how I phrased my explanations, which point I made, or how often. He spent as much time trying to poke holes in my reasoning, to get me to see his perspective, as I was spending trying to get him to see the situation through my eyes.  

And then it hit me. I could stop trying to make him understand, because he simply was not able to understand and would never be. Not because he — or I — had any particular failings. I just realized that every person is only capable of understanding from their own level of perception and experience. 

It was like a huge weight lifted off my shoulders. It was a freeing sensation where I suddenly realized I don’t need to struggle in that area any longer. Thank heavens, because every little thing was so hard right then.

I gave myself permission to stop trying and simply accepted that he was not going to understand. I let myself off the hook: no more frustration that I couldn’t figure out the right way to communicate what I wanted him to understand. No more merry-go-round of sparring moves in a debate about whether my choice made sense… to him. Because that didn’t matter. It made sense to me. I needed to take care of me, and that was the only thing I was responsible for. Nothing more.

This one incident changed the way I thought about feedback from others, and it helped release me from the worry and weight of how others saw me. It was enough that I understood me. I was enough. 

I have learned how to release others from the judgement and burden of an expectation they are not capable of meeting. And I have learned how to release myself from the judgement and burden of a persuasiveness I am not capable of delivering.

I learned this as I was leaving a relationship, true, but this approach still applies, perhaps even more importantly, to those relationships you wish to keep.

Here’s why:

  • In a sad way, the more you try and struggle to make them understand, the more entrenched and oppositional the relationship may become.
  • This increases stress and can increase the width of the chasm between you.
  • This can also increase your chronic illness symptoms, such as the fibromyalgia symptoms of pain and fatigue and fog. 
  • The harder you try to make them understand, the more you signal your unhappiness with the way they are. Strong, healthy relationships flourish when you demonstrate acceptance of the whole person, from the wondrous to the flawed, through your behavior. When you give your partner the space and freedom to breathe and to be, you open the door to transparent dialogue about how your illness affects you both.

So, I suggest letting them go. Release them of the shackles of your disappointment over their inability to understand you, your condition, your pain. 

Release yourself of the burden of failure to convince and persuade. 

Choose to enjoy your relationships the way they are. I choose to cherish those I love for who they are even when they don’t understand.


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