I was already struggling with my outward appearance before I was diagnosed. My features were changing. I had just started to learn the concept of eyeliner. I was trying to mirror magazine covers. I wanted to feel pretty, and really at that age, it was all I cared about. In one fell swoop, I was hit hard with a dose of reality: IBD doesn’t care.

I’ve looked in the mirror at times and didn’t even recognize the person looking back. I’ve stood there, gangly and bony. I’ve stood there with puffy cheeks and a distended stomach. I have even stood there at my doctor-recommended “normal” weight and felt ugly, detached. I wanted to crawl in bed and hide. Over the years, I’ve learned to accept the fluctuations (and to keep varying sizes of clothes down in the basement). We, as women, already face so much pressure to look a certain way. As a sick woman, the weight of these expectations feels tenfold. Not to mention that my body is covered in scars. I’ve had more than 20 surgeries at this point. When I was a teenager, all I wanted to do was cover them up. I hated them. I was ashamed of them, my body. Now, at 25, I bare my scars wherever I go. They are the markings of strength and a persistence to fight that I didn’t even know I had in me. One day I just decided I can’t beat myself up over something I can’t control.

Two weeks ago, I had fluid drained from my abdomen because “scar tissue seeps,” something I never knew was a thing — until IBD. Having felt pretty good post-procedure, I woke up this morning with what could very possibly be my fourth fistula. Like I said, if it’s not one thing, it’s another.

Having IBD has helped me to realize your outward appearance isn’t everything. Before my diagnosis, I thought it was. After having mourned that ideal, I feel happier, more free. IBD has also made me more patient and more compassionate. Because I’ve learned to deal with one thing at a time with my disease, I use each obstacle as a chance to grow. Rather than fighting new problems, I take a breath and remember that at this point, I can get through anything. I’ve managed to take a phrase that has such a negative connotation and turn it into motivation to remain positive, no matter what comes my way. In doing so, I’ve become a stronger and more aware individual. So even though there’s always something, I’m always ready when that “something” comes.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

So what to say instead? “My friend also has this. I’m always up for learning more about the condition so I can help you both!”

3. “You’d feel better if you just relaxed/took a holiday…”

(See also: “I read about some alternative therapies. Have you thought about trying…”)

There likely isn’t a treatment or potential medication left unturned in our quest for intestinal normality. But our illnesses regrettably don’t have a cure. Comments like “take a break” don’t always help. We’ll still have an incurable illness. We’re not trying to be negative, just realistic.

So what to say instead? “Wish you could get a break from your illness!”

4. “Why are you always tired?”

(See also: “Everyone gets tired.”)

Prolonged fatigue is a common symptom of most chronic illnesses. Fatigue isn’t “just” tiredness. It’s intense and unending exhaustion. No amount of sleep is often ever enough to shake it off. A nap or an extra hour in bed here and there just won’t cut it. When people question this utter exhaustion, it’s both upsetting and infuriating. We know everyone gets tired, but not everyone has everyday life to deal with and a chronic illness at the same time.

So what to say instead? “Anything I can do to lighten your load?”

5. “You just need to make some changes to your diet.”

(See also: “Should you be eating that?”)

Please don’t tell us what/where/when to eat. When we can enjoy a meal without a hint of pain or nausea, it’s like we’ve reached Valhalla. Food and drink and IBD patients can have a love-hate relationship. When we can eat, we can be utterly and almost instantaneously floored by incredible abdominal pain, or find ourselves getting up close and personal with the porcelain for the remainder of the evening. Concern about our diets is natural for those who care about us, but it’s important we don’t feel under scrutiny whenever we are eating in company.

So what to say instead? “What can I make you to eat?”

6. “It will get better, just be patient.”

(See also: “You’ll feel better after meds/a good meal.”)

Again, the incurable part rears its ugly head. We won’t ever “get better.” We may at some point feel healthier than when we’ve been at our lowest medical ebb, but time won’t heal IBD. It’s not a cold or flu where in a few days we will be fighting fit again.

So what to say instead? “I hope you start to feel a bit perkier soon”

7. “Are you in the bathroom again?!”

(See also: “Must be great to get some many extra breaks!”)

IBD patients don’t actually want to spend hour after hour in excruciating agony, clinging for dear life to a radiator or a sink or whatever is closest to hand. We aren’t actually hiding in there; we are forced onto the porcelain throne through no fault of our own.

So what to say instead? How about no comment at all? Or perhaps a gentle question as to whether there’s anything you can do?

8. “You’re too young to be sick.”

There is no age restriction on illness. According to the Crohn’s and Colitis Foundation of America, most people are diagnosed with IBD before age 30, but like other chronic illnesses it can strike any age at any time.

So what to say instead? “I feel for you!”

9.  “It could be worse…”

(See also: “You should consider yourself lucky.”)

Most people know that things could always be “worse.” I’ve never been sure what it’s meant to instill in the recipient: grace, embarrassment, silent reflection?

So what to say instead? Nothing. How about a hug?

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.