Surviving and Thriving with an Invisible Chronic Illness by Ilana Jacqueline

Author:Ilana Jacqueline
Language: eng
Format: epub
Publisher: New Harbinger Publications

Option 3: Mentors

Mentors don’t have to be full-time support or even just one singular person who is committed to your situation alone. It can be a mentor from a support group or other patients who have gone down a similar road. You can find mentors in a variety of places, including in-person and online support groups, through friends and relatives, and even through your doctor if he’s willing to forward your information on to another patient. The most important thing is that you feel comfortable going to them in times of turmoil to ask questions, seek advice, and find comfort.

Not long after I was first diagnosed with POTS, I got a phone call from an experienced patient. She explained that my mother had posted my story on a forum online and she’d asked for my number to get in touch. She said that she’d been diagnosed only a few years ago, but that she was sure she’d had this disease since childhood. “Do you still work?” I asked her. (I straddled the line of unemployment at that time, and that was one of my most burning questions.) She said, “Oh yeah, definitely. There’s only been a few flares where I wasn’t able to.” I felt my heart do a backflip in my chest. I fired off more questions: “Do you take medications? Have you had any heart surgeries? Are you better off living in a colder climate?” She quickly answered all my questions, mostly optimistically. I continued with my line of questions. “Were you able to have kids?” I asked. “Three,” she said, and I had to wipe the tears away. I said, “You didn’t have any problems? You were fine?” She confessed, “I gave birth in the cardiac unit. I almost had a heart attack during labor, but they monitored me and I was okay.”

She continued to explain that not everything was simple, but it was survivable. This conversation was so important to me because we can get mixed signals about what we may or may not be able to do in the future, especially from doctors who are trying to express how important it is that we take our diseases seriously. Hearing from another patient can help put your fears into perspective and open your eyes to options you didn’t know you had. It was the first time since researching my diagnosis online that I started to feel optimistic.

Whether you’re brainstorming medication options with another patient in the waiting room, or you’re getting a call from a stranger who found your story online, these kinds of connections are a great way to start the process of getting educated about your disease. It can also help alleviate some of the fears you have about how your life will look. And, later, when you feel you’ve gotten a better grip on your disease, make sure to pay it forward to another newbie.

What Makes a Good Mentor?

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