a person hesitating to write on a label

Is Labelling Ourselves As Chronically Ill Helpful or Harmful?

Some people believe that the words we use to define ourselves can hold a lot of power over who we become. I am one of those people. And it is a lesson I've learned through my long-established practice of self-criticism. Sentences like “I will never be able to achieve that”, “I can’t do this” or the one I use the most, “I am sick”, have all defined the view I hold of myself. Using negatives so often, I end up shaping how I feel and most importantly, who I believe I am.

The "chronically ill" label is one that has very little positive about it. Yes, it is an undeniable fact that I have endometriosis. I have the papers to prove it. It is also a disease I live with daily, and because it has no cure, it is chronic. I've been writing about endometriosis for years now, and interestingly, on several occasions, I've been told I shouldn't use this particular label to refer to myself.

In truth, it is a complicated set of words

Defining myself as someone who is sick most of the time shapes my identity, obviously not in a good way. Nobody wants to live with an illness that has no cure. I have to be very mindful of how I use the term “chronic” as, quite easily, I can slip into a mindset that is full of self-limiting excuses. It can provide me with a myriad of reasons to give up on pursuing something that, although tough, could be great for me.

Also, I am more than this illness, in the same way, that I am more than just a woman, or a writer. For instance, I am a brunette. It’s how I look, but I am so much more than my hair color. It is also something I can temporarily change with a visit to a hair salon. Although underneath I will always be a brunette, what I see in the mirror, and what others see, could easily be a platinum blonde.

The term chronically ill also defines how others see me

When others see my health limitations above everything else, it feels like being narrowed down to my worst quality. I hate being looked at with tilted heads and worried looks. To some, I am just a walking disease. I become the one to worry about, the one whose health will always trip her up. Is she in pain? Why can’t she smile a little more?

While I am not illness-free, endometriosis is an aspect of my life

I cannot ignore worrying symptoms that call for rest or a check-up. I need to remember that I require a specific diet to avoid flare-ups. Being kind to myself means recognizing there is something inside of me, a time-bomb, ticking away, sometimes loudly, others quietly. I cannot happily forget that if I don’t watch my symptoms and see those flare-ups coming, I will pay a hefty price. Managing this disease requires self-awareness and a lot of self-care, and I get very few days off.

Maybe the key is not seeing myself as chronically ill, but as someone living with a chronic disease.

Life with a chronic illness is a tough reality for many

This illness is not in our heads. We don’t create this illness by the language we use. Thinking about being chronically ill does not produce the painful symptoms we get to live with. A complicated combination of adhesions, polyps, and cysts are doing that for us. Endometriosis is calling the shots.

I don't believe the term chronically ill to be harmful. But it must have the underlying quality akin to triumph. It must recognize the fact that we continue to live, despite an illness that is sabotaging our existence almost daily. A chronic illness does not define our personalities. It is a set of obstacles we overcome regularly. Most importantly, it does not make us who we are.

We are, chronically and daily, so much more than this illness.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Endometriosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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