5 things I’ve learned from people with an autoimmune disease

1. Understanding your disease is the first step on your journey

I’ve learned from meeting many people with chronic disease that every person faces his or her own unique set of challenges. Maybe you keep hearing the name of your disease but still don’t fully understand it. Maybe you’re not sure why there are times when symptoms flare up and times when they’re quiet. Your disease might feel like a beast, but understanding how it works can make it easier to handle. Though it appears on the surface, conditions like psoriasis are caused by activity underneath the skin – for example, the immune system may be creating too much inflammation.

When I explain psoriasis to someone who has it, I use a relatable example. Like a boiling pot on the stove, you must work to control the immune system because if it stays on high the whole time, you will ruin your food. When the flame gets turned down, you are more likely to have that perfect blending of flavors. Medicine can sometimes act as the control to turn down this flame. Often when I discuss this with someone, I can see their eyes light up and they begin to piece together their own experiences with a new perspective.
 

2. Look for guidance and discover the strength you have within

Whether you’re a recent high school graduate who has to learn to manage all of the aspects of your care on your own for the first time, or you’re a parent who has to balance taking care of yourself when others depend on you, remember you have the strength to gain control of your health. You may just need a little guidance to get there. Don’t be afraid to reach out and ask someone to point you in the right direction.

3. Know there are people you can confide in

Having a chronic, dermatologic condition can be painful -- not only physically, but also emotionally. It might make you want to hide. I also know that you have the power to work through the array of emotions.

One patient told me she felt like a child when we first met because she didn’t want to know anything about her disease, she wanted to close her eyes to it. Through our meetings and phone calls, she proved to herself that she could take charge. I discovered just how much people can grow and change with someone there to listen.

Keep in mind that there are people out there ready to listen to your story, your frustrations and fears. Sometimes it can help to think through where those feelings are coming from and how you’ve tackled other hard times in your life. Ultimately, this can help you create your own set of tools to build up confidence and overcome the hurdles.
 

4. Your story inspires those around you

Don’t forget that you are an inspiration! Each day, you remind people like me of why I became a nurse and love to care for others. You motivate us with the small things like a hug or a smile, and with the big things like an “Aha!” moment or a milestone event. It’s a gift for your friends, family and people like me to see your growth and self-confidence.
 

5. Always remember, you are in the driver’s seat

As a nurse ambassador, I may have met you at a crossroads in your life, perhaps once you’ve already started your journey with a chronic disease like psoriasis or hidradenitis suppurativa (HS). My goal is to be there by your side each step of the way for knowledge and support. But, one thing you should never forget is that you are the one in the driver’s seat. You have control over what comes next and where you’re headed, so keep your eyes on the horizon and know you’re not alone for the road ahead.