Stop Telling Me “You’re So Strong”

You’re so strong. I don’t know how you do it. You’re so young to be dealing with this. You’re too young to be doing this.

With a rare disease diagnosis, phrases like this are often triggering. A lot of people that say these things mean well, but need to understand that there is a deeper issue for a rare disease patient when making comments like this. If I had a dime for every time I was told I was so strong or too young to be dealing with something, my medical bills would be obsolete and I would be on a yacht somewhere.

Some days we feel weak

I think it’s important to bring to light the danger of using phrases like this because then we are expected to play that role of being the strong one, even on the days where we feel weak. Even on the days where we want to be immature we have to be mature, simply because that’s what everybody around us is telling us that we need to be.

At 19 I had to grow up fairly quickly, and showing my maturity gained the respect of my doctors who eventually listened to me. But something that beats in the back of my mind constantly throughout the day are these comments about how I’m so strong, how people don’t know if they can deal with this at their age, or at any age for that matter.

Unfortunately I’ve had no choice. These were the cards that I was given, and I made lemonade out of it.

I don't want pity

Although some parts of my youth were stripped away for me and I may not live a normal 25 year old's life, I don’t want people to pity the life that I have. I’m so grateful for what I do have, and when people say things like I don’t know how you do it some days - I don’t either. It’s just something that we have to do.

Changing the narrative in the jargon that we use to describe the lives of our disease as patients is imperative. We want to empower those with a rare disease, not make them feel like their life is one big mistake with never ending issues and unhappiness.

A new normal

I’m here to tell you that it’s possible to live the life that you want with a rare disease. No it’s not "normal" but it’s your new normal. Blocking out certain things that people say or learning to not take the words of others so seriously has been very important in my rare disease and healing journey.

We need to start saying things like “I’m proud of you. I know it’s hard but you’re doing amazing. You don’t have to be so strong all the time, if you ever need anything, I’m here.”

Next time, try to rephrase the sentences that you speak because although you may mean well, the slightest of words can really cause someone’s mind to spiral. Practicing empathy can get us very far.

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