This is the first interview posted on The Master Patient and is in response to Day 15 of The Health Activist Writer’s Month Challenge hosted by WeGo Health.  Today’s prompt: Participate in our guest post swap day. 

Abigail and I decided on interview style for our guest posts and what follows is her answers to five questions relating to her life with invisible chronic illnesses.

Background:

My name is Abigail Cashelle, and I write at Hidden Courage (hiddencourage.wordpress.com). I’m in my mid-twenties and am currently a graduate student in the United States. I have Ehlers-Danlos Syndrome (EDS) Type III, which is a sister disease to Marfan’s Syndrome (what Sarah has). I write about my life with a chronic illness and how friends & community can really make things so much better (or worse.) I also write about the ways in which illness interferes with ordinary life and the ways in which one can cope with the lack of boundary between health and the rest of life. In between, I write about my spiritual journey, my crafting projects, and my adventures in graduate school and beyond.

Q: Tell us a little bit about your illness(es).

A: I have something that we haven’t quite nailed down yet. I’ve been diagnosed with a multitude of things including chronic fatigue syndrome (or myalgic encephalomyelitis in British English), fibromyalgia, EDS III, functional GI disorder (with small intestine bacterial overload), major depressive disorder, and more!!

Symptom speaking, whatever I have affects a large number of different systems. It’s confusing keeping track of, so much so that I’ve actually started carrying around a medical resume! Here are the basics: overwhelming fatigue, widespread pain & inflammation, migraine headaches, lack of visual depth perception, food sensitivities/digestive disorders, hypermobility, mood swings, chest pain, and a weak immune system. Mostly, the fatigue and the pain (and sometimes the depression) mask everything else. I try not to spend too much time thinking about how huge the disease is.

Q: How do you find out about your illness? Was this something that came about suddenly? Did it take a while to find the right answer?

A: I first noticed being ill midway through high school. I’d never been a sickly child, and gradually I started becoming really sensitive to noise, getting worn out really easily, and just generally feeling a lot of pain. It took about four years before anyone (including my parents) believed that I was actually sick, another two years of people stumbling around answers & making intelligent guesses, and the past two years (finally!) some physicians & health professionals making a concerted effort to find a treatment & include me in the decision-making process.

We were worried for a while that I had EDS IV, which is really serious. I saw a specialist earlier this month who says that she thinks it’s unlikely that I have that type. Good news, but it means that it still seems like the blind leading the lame.

Q: What do you do when people ask you why you’re sick? (or why you’re still sick)?

A: I get this question a lot, and it drives me crazy. I have three standard responses, depending on the audience:

1) random person walking down the hallway: I’m doing better OR I’m happy. (If someone sees me walking down the hallway, I’m doing better than the day when I was stuck in bed (by definition).)

2) someone who knows me (like my adviser, my classmates, my neighbor, etc): I have a long-term condition. It’s hard, but I’m pushing through it as much as possible. Some days are harder than others.

3) a friend: they usually don’t say this in the first place. But I usually turn this into a conversation about prayer requests or ways in which they can help me.

Q: How do you find a balance between being sick and not letting being sick define you? Or is there a way to redefine yourself through illness?

A: This has been hard, particularly since our cultures are really focused on being healthy. We greet people by asking “How are you?” or “How are you feeling?” We assume that a person’s well-being is necessarily tied to health.

Two things have really helped me change my perspective:

1) A simple tip from Pain Tracking by Deborah Barrett: answer “How are you?” with the response “I’m happy.” The question doesn’t have to be about your physical health. It can just as much be about your emotional well-being (or lack thereof.) You don’t have to lie to people and say that you’re feeling well if you’re not. But you can be happy while being sick. And that’s probably more meaningful.

2) A friend named Timothy posted on a social networking site a while back about the church being over focused on healing and forgetting that there’s a person underneath. I think that comment started me thinking about what’s more important: the person or the descriptors? Timothy, his wife, and his friends have been amazing models to me because they place the person first. To them, I’m a friend foremost. If I’m sick, they pray for me and visit me because I’m their friend. If something good happens to, they celebrate with me. They care about me, so they enter into my life whatever it is.

Q: What’s one thing that you’ve learned about yourself in the past year or so, as a patient or as an activist?

A: I’m learning to trust my instinct better. I’m good at asking for advice and for listening. The problem is that the situation I find myself in is very complicated (with illness, school, family, and church) and no one knows anyone else in the same boat. Because it’s so odd, a lot of times I find myself wondering if there’s something I’m doing wrong that lands me in a peculiar place. I second-guess myself a lot.

I’m realizing though that my instinct is pretty good. Sometimes I can just run with it. So I’m developing some self-confidence. Hopefully, that’ll translate into being more confident in front of other people.

Thanks Abigail! Make sure you check out her blog at Hidden Courage (hiddencourage.wordpress.com).

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