"But You Don't Look Sick"
Join Wana + Melody, the found of the “But You Don't Look Sick” community to learn about foundational issues with the US health system, and why healing through both mind x body is so impactful.
1. For years you've been building, “But You Don't Look Sick” as a community. But now you've got something new on the horizon! Why don't you tell us about it?
We were a community figure at first, and then we realized we can help people more by becoming a nonprofit. It’s all very new.
Our main focus is to help patients by paying their medical bills.
My master's is in healthcare solutions, and by studying that, and with my own patient perspective, I realized how messed up the healthcare system is and how healthcare as a whole needs to be reformed.
It's not just about paying patients bills tough. We need to raise awareness and erase stigmas. We also need to help patients by providing what they need such as providing resources and giving them access to other community opportunities like Wana so that they can connect with people who are like them.
2. What are specific aspects of our troubled healthcare system that you would like to raise awareness around?
Already as a patient, I thought things were messed up, but then learning it and studying it in school and having teachers actually tell me how corrupt things are…I just found myself multiple times with my mouth wide open thinking “how is this legal? How is this okay?” And the only response I'm left with is “It's been this way forever and no one's changing it” and “No one's reformed it because all the people in charge, aren't sick, and it's not directly affecting them.” That's when I realized there needs to be people like us that make a voice, make a stand and make a difference. Because this isn't okay anymore.
I have a rare neurological disease, and when I was diagnosed, they told me that there's no proof that treatment will help my disease. There were only experimental treatments with plasma and they were $10,000 per plasma infusion. I was told it would protect my myelin sheath from destroying itself more, but I would need it every two weeks to keep my body from destroying itself. “If you don't do this treatment, you're likely going to end up deteriorating in a wheelchair”…and that was my option: to pay $10,000 every two weeks or die.
I thought that was messed up and terrifying. I felt alone and embarrassed asking for help. I thought, what do I do? So, I created a Go Fund Me. No one in my personal life even knew what I was going through because I was battling all this privately and all of a sudden I needed to make a Go Fund Me and start telling the public my story.
I felt embarrassed and weak, But it's what I needed to do to be able to pay these bills. And then as I was getting treatment, I realized there's so many patients going through the same thing. I've met cancer patients who say they've already had hundreds of thousands of dollars in medical bills and they haven't gotten better.
So, now they're choosing to stop their treatment and die because they don't want to bankrupt their family. I’ve met people who tell me that they can't even afford the treatment anyway, so they just know that they're going to die because they don't want to put that financial burden on their family. How many people are actually having to sit there and ask themselves, “Do I go bankrupt to possibly get better or do I just choose to give up and not become a burden on the people around me?” And unfortunately, that's the messed up reality a lot of us are faced with.
Any time I tell someone that has never had a medical experience like that, they, too, wonder how is that possible? How is that legal? They're just unaware of it. They don't even know that that's happening. And then when you talk to people with chronic illnesses and chronic conditions, they look at you like, yeah, I have to make the decision all the time between paying my grocery bills or picking up my medication.
That's just the reality that we're facing, and it's because we're embarrassed and we feel alone and we feel like we're the only ones struggling, but we're not alone.We're a third of the population in America struggling with some sort of chronic and invisible illness. In other countries, like Scotland, they’re saying 48% of their population has some sort of chronic or invisible condition. So that's a third to half of us that are struggling silently, just because we're embarrassed. And we think that we're alone. But in reality, there's so many more of us out there than we think.
3. When it came to your own mental and physical health, where did you see them become the most intertwined?
They are so interconnected. For me, tackling a lot of my physical health conditions and getting to a better place with them came from tackling my mental health problems and really addressing those head on. It was a light bulb moment for me in realizing that. It's funny when I think about it now – it’s so obvious! If you lose your leg, how is that not going to affect your mental health? How are you not going to end up depressed or anxious? You just lost a leg! When I first got diagnosed, I became depressed. I became anxious. I say a part of myself died.
When I became sick because I lost all my old hobbies. I lost all the foods I like to eat. I lost all the activities I like. I lost the friends I like to hang out with…and then I gained new hobbies, friends and the like. But with that comes grieving and depression, and that is all intertwined with mental, and physical health. To pretend like they're separated it really blows my mind because in the beginning doctors were always saying things like “Oh, you're just depressed” or “you're just anxious” when I was losing weight or throwing up or had blood clots… I was told that so many times. I want to look at them and be like, yeah, of course I'm depressed! Of course, I'm anxious! Don’t you see what's going on? I have blood clots in my chest or I have a port-catheter…this is stressful stuff! Who wouldn't be depressed or anxious??? Realizing that my mental and physical experience are so related to each other has been very important for me. It was the first step in my own healing journey.
4. If you could change one thing about our healthcare system that would positively impact our financial issues, what would that be?
In my master's program, I studied integrated health care. We have to study all other countries’ healthcare systems as well; which ones work, which ones don't work. We time and time again find that the main issue is that in comparison with other countries, we’re not focusing on the whole patient here - we're playing a chase-around game constantly.
So, let’s say I go to the doctor and I say, my head hurts. They're going to say, okay, you need to be referred to a neurologist. The neurologist will have a co-pay of $50, maybe $100, and then I have to go there and get testing done. Then he might say, “I think your headaches are coming from your diet. You need to go see a gastroenterologist.” There's another copay, there's another doctor's appointment, and then it can keep going in circles until maybe they see that it’s actually psychological, so you need to see a psychologist. And on and on. Whereas if you focus on whole patient care, you have the entire doctor's team there the entire time. So, if I go in and I say, “I'm having headaches”, there's already a neurologist, gastroenterologist, endocrinologist, psychologist, a blood testing team, a phlebotomist – everyone is there at that location. They collaborate together. They figure out what's going on with a patient, totally eliminating running in a circle. The co-pays, the spending months at a time to get diagnosed can very often be avoided this way. You look at countries in Europe like Spain, the UK in general, and they're getting patients diagnosed way faster than we are. That's cutting a lot of the financial costs altogether.
During my master’s we were told a story where America is like a big mountain where all the people are at the top of the mountain, but these people keep falling off this mountain. Other countries figured it out, and they put a fence at the top of the mountain to keep people from falling off. Instead, the US decided to put an ambulance on the bottom of the mountain and drive all those people to the hospital as they fall and bill them. And that's really what we have happening right now. We need to be addressing the entire patient. We need to be addressing the entire body and the entire healthcare system otherwise we will just keep running in circles, overcharging patients, and overburdening our medical professionals. So, it's an entire system change, not just covering the ability of patients to pay medical bills.
Some health care professionals and organizations in the US are starting to figure it out. I go to a hospital here called HonorHealth and they've recently transitioning into whole-patient care. It's more like an outpatient hospital system. They have psychologists, naturopaths, they're adding medical massages, chiropractors; you can get a neuropsychology evaluation done - really all of these things that need to be done from the beginning to really help patients, because otherwise we're wasting so much energy running in circles and paying all these bills all while not even getting answers.
5. How have you maintained and improved your physical health?
It sounds crazy, but for me, I do Pilates five days a week. Even thinking of that now, it sounds crazy because I was doing physical therapy for my heart due to my condition. If my heart rate gets too fast, I pass out. I have POTS, so my heart rate goes crazy all the time. It goes from 50 beats a minute up to 250 beats a minute. Sometimes doctors think the heart machine is broken thinking “this can't be right”. At times I couldn't walk very far without passing out, so I was having to do physical therapy for my heart to really regain some of that strength back. I actually ended up in a wheelchair for a while from meningitis from my treatment…twice. So, I had to relearn how to walk twice!
I was a very active person before getting sick. I used to be a boxer. I used to be a dancer. And for me, that was very frustrating that I couldn't work out, that I couldn't even walk without passing out or having a seizure. The more I worked in physical therapy, they suggested Pilates. I just imagined some crazy intense workout. And thought, yeah, that's funny. But they pushed because they figured it might work with my heart and POTS in particular. They were right!
The machines, they're all laying down, so you lay down on your back the entire time, and then you're working with springs. For me, with my heart, being vertical is what makes me pass out because all the blood starts pooling to my legs. If I'm laying down, my blood pressure stays regulated, and I don't pass out. I started doing Pilates one day a week, and then after doing that for a while, I felt strong enough to increase two days a week and now I've been doing it five days a week. I'm off all my heart medications, all my blood pressure medications, and I’m managing to regulate myself by strengthening all those veins and everything by laying down and working out.
I also do acupuncture. I do cryotherapy. I also go to the chiropractor once a week for my EDS. So for me, the full body wellness is really important and I'm always finding new ways to improve my health. My mom used to be a naturopath. I think that's also why I'm so fully obsessed everything needing to be combined. You need to focus on the psychological aspect of it and then Western medicine and Eastern medicine, because together I believe is really where you find benefit.
6. What are some words of wisdom you would share with someone who is newly diagnosed or experiencing new symptoms?
“You're not alone” (how appropriate)! I really wish someone would have told that to me because I felt so alone.
I know so many people who think they're the only one that's experiencing that feeling and they feel embarrassed and weak thinking that they should be stronger than whatever it is they're going through. But it's okay to feel weak. It's okay to feel scared. It's okay to feel sad. It's okay to cry. It's a scary thing that we're going through. Finding the community and tools that can help you will ultimately make you feel better.
That's been important for me. I needed to find new outlets for when I was feeling stressed or overwhelmed. And for me, that was through art and finding new ways to workout. And I really suggest finding whatever that is for you. What makes you happy again? What brings you joy again?
Also, don’t forget to acknowledge how you're feeling. Don't push it away and say, “I just need to be stronger. I need to be tougher.” The strongest thing you can do is acknowledge how you're feeling and work through it because that's where real strength comes from.
Truth is, the more people that I've been honest with about how much my life sucks, the more honesty I get back from them relating to my story or them telling me “yeah, I've been through the same thing”. When I pretended that I had everything going well and that I was okay, those were the moments I felt the most alone. When I was honest about the "sucks" I found real moments of connecting with people and genuine help, because I was being honest and they felt like they could be honest back to me.
7. Tell us what you are doing now with your nonprofit. How does it work, and how will you be supporting people like us?
It’s exciting – we’re in all the beginning phases of that. Right now, we are building a patient application portal. So, say you're struggling with paying your medical bills, you can go on the portal and put in your name, what conditions you have, your doctor's office contact information, etc. I’ll make sure that it has HIPAA guidelines intact and that we're allowed to and able to reach out to your doctor to have a signature on there. Then we'll reach out and pay directly to those doctors. We also evaluate that the applicant is honest about what they're struggling with. Overall, it's going to be a long process of grant writing! We’re opening up a bank account, so all of the grants will start going through there. As we collect the funds, we'll be able to start paying patients bills.
Hopefully in the future, our efforts will be another way to raise awareness so that patients won't even have to stress or make that decision anymore. Maybe there won't even be a need for a nonprofit like us anymore, because insurance is finally working how it's supposed to, or the medical system is working how it's supposed to. But until then, I feel like there's a big gap between medical bills, patients and what we truly need. Right now, there needs to be a bridge for that gap. And that’s what we’re working on.
About Melody Olander
Melody Olander is the founder of the “But You Don't Look Sick” community and has had a rare disease since she was 17 years old. At 23 she was also diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Postural orthostatic tachycardia syndrome (POTS), and Ehlers Danlos Syndrome (EDS). After publishing her book, "But You Don't Look Sick." she decided to dedicate her time towards connecting the chronically ill community.