Interview

Melody Olander is a 23 year old woman from Arizona. She spends her day to day life with a hidden disease that not many people know about. From the outside she looks completely fine, but on the inside hides a rare disorder. CIDP is so rare in fact, it is said that there are only around 4-7 cases for every 100,000 individuals. Not only is the disease quite rare, but it is also usually common for males, and individuals over the age of 50, although the disease can begin at any decade of life. Melody has a very inspirational view on her everyday life living with this disorder, and has great suggestions as to how individuals might interact with someone who has a hidden disease. 

“I know you suffer from a hidden disease, Could you remind me what it is called?”

“Yeah, so I actually have three conditions. The first one is called Chronic inflammatory demyelinating polyneuropathy, and that’s CIDP. And then I have Ehlers-Danlos syndrome which is EDS, and POTS. So it basically affects my total autonomic nervous system, which is everything that works automatically in your body. So like, my heart rate, my organs, my stomach, lungs, everything is affected and doesn’t work properly without medication. 

“So how would you describe your everyday life living with CIDP?”

“Definitely way slower and different from most people. Stress is a major trigger for me, so is heat, or anything that gets my heart rate too fast. So I need to do most of my activities way slower than most people, and really just on my own time. I suffer from a lot of nausea and throwing up, passing out, and symptoms kind of just happen randomly out of the blue, so my day is really up in the air. I need to just focus on one moment at a time and not really plan too much. So it’s really different from most people and how they go about their days. They can count on doing something at a certain time, but I can’t. I also have to take medications every couple of hours just to keep my organs to keep functioning on their own since they don’t do that automatically.

“Wow, so what is one thing you wish people would know about your disease?”

“Just honestly how hard, and how isolating it is. I feel like a lot of the time people in the chronic illness or invisible illness community, they kind of put on an act, and pretend like they’re okay a lot of the time. We don’t want to make people feel uncomfortable or share how bad we’re feeling at the moment. So a lot of the times when we don’t feel okay we hide at home, alone because we feel like we can’t open up to anyone else about it. So it really is an isolating situation, and you do lose a lot of people you used to be close with or friends with, and it’s this completely different life you end up starting once you get sick.”

“Okay, so what steps have you taken to make life easier living with CIDP?”

“For me it’s really paying attention to what stresses me out, or what might be a trigger for me, so I really just have to be conscious and aware of how I’m feeling at all times, which I notice a lot of people don’t have to do or don’t do. If someone is fighting or arguing, for me it’s really not worth it to fight back with them and raise my heart rate and pass out or whatever, so it’s just a really different way of going about my day and my life. I’ve also focused on building up a community around myself that I can relate to. I spent such a long time when I first got sick trying to fit into a world that I didn’t fit into anymore, and that really made it harder on me to adjust. Now I have a community that I can talk to and relate with, and that’s been one of the main reasons I don’t feel so isolated anymore.”

“Wow that’s very interesting. I know you published a book in the past, was it mainly focused on CIDP?” 

“It was mainly focused on what it feels like to be going through a chronic illness and not looking sick but being sick. The title of the book is “But You Don’t Look Sick.” and that’s because that is the number one sentence I’ve been told the entire time of being sick. It’s weird because even if you are feeling like crap, people always tell you “Oh but you don’t look sick.” or “You look totally fine though.” and it feels like it invalidates everything you’re going through. I’ve been in a hospital bed with tubes and IV’s everywhere and have nurses tell me “oh, but you’re too pretty to be sick.” Or they tell you to get better, and it's like thanks, I’ve been sick for seven years and it’s not gonna change any time soon, but cool. That’s really what my book focuses on. It addresses a lot of awkward topics about mental health or mental illness topics, and that’s the whole point. At the end of the day, everyone has struggled and put on a strong face. 

I often try to explain it in another way that others can relate to. If you have someone close to you pass away, you might cry or be unable to be a part of society for a little bit, but eventually you’ll need to put on a strong face so you’re not walking around everywhere crying. Or eventually you might be dried up of tears, but you’re still sad. But if you open up to a friend and say “I’m feeling really sad right now about ____ dying”, it would be extremely invalidating for them to say, “but you look fine!” We all might look fine on the outside but on the inside, you have no idea what people are going through.”

“I understand what you mean. Have you had CIDP from birth? If not, when did you get it?” 

“No I actually got it when I was seventeen, so I’m twenty three now, and I’ve had it for almost seven years. 

“Is it contractible or is it something that just happens?” 

“It's something that just happens, they honestly have no idea how you get it. They assume it’s an auto-immune disease. So your immune system decides to start attacking itself for no reason. Yeah, it’s really strange to look back on. I was totally fine one day and then one day I woke up blind in my left eye, and ended up in the hospital in a medically induced coma… and now it’s almost seven years later..”

“Interesting, okay so just to wrap things up, is there anything else you want me to know about CIDP? Is there anything you think is important that I might need to know about you?”

“I think honestly just for all conditions and all people, whether it’s mental health, physical health, chronic illnesses. At the end of the day, no one knows what someone else might be going through. So instead of invalidating them, or cutting them off and saying “But you don’t look sick.” or “But you look fine.” maybe just take a moment to listen to what they’re going through and see if you can be an ear for them. At the end of the day that’s what we all need, we’re all struggling in some way, and we all could use a shoulder to lean on or someone to be nice.”

This interview has been edited by Natalie Randolph.