The following is the transcript of our podcast episode, season 1, episode 1- recorded February 2020. We’re thrilled to now be offering episode transcriptions, enjoy the read!
Welcome to the real life show. Living with a chronic illness.
We’re your hosts Cassie and Chelsea.
I’m Cassie a single mom living with a chronic illness who is extremely passionate about living a full and happy life.
And I’m Chelsea, mindset coach that has a passion for helping people learn to put themselves first and be the best version of themselves. Each and every day we came together to create Spoonies Unite an uplifting community that offers resources, guidance and support so you can live your best life while giving you the space to be yourself, be heard and feel understood. This show is not only for those who live with a chronic illness but their friends, family, spouses and just anyone else existing on the earth. There’s a little something in here for everyone.
Hello and welcome to today’s episode of the Real Life Show. Living with a chronic illness. I’m Chelsea and I’m here with Cassie. So today we’re talking all about what a chronic illness is.
The real motivation behind this episode is for it to be a resource that you can send to someone that maybe curious about what a chronic illness is or is trying to figure out a little bit more about what you’re going through every day. So Cassie and I, we would like to start off by saying that we’re not medical practitioners. We’re not. We’re Pilates instructors, people and our experiences are by no way advising medical stuff.
So we will be talking about our own definitions of what a chronic illness is and kind of how we view that. We’ve also done some research, found some definitions on the Internet, and we’ll be talking about how those sit with us and all that stuff. So again, this episode is great, for if you’re just trying thio to learn how to define a chronic illness, or if you would like to send it to someone that’s wanting to learn a little bit more about what you’re going through.
So, Cassie, How would you describe a chronic illness as someone who has a chronic illness.
Right Okay, my version of a chronic illness is, and for those of you who don’t know, I have Crohn’s disease which is an autoimmune digestive disease., which, by the way, there’s IBS, And then there’s IBD, which that’s one of the interesting things- you know, disease versus just illness.
Anyways- How I would describe chronic illness would be, struggles that are physical or mental, I guess emotional too, but very much physical ailments and struggles that affect you on a daily basis that can be repetitive- huge amounts of ups and downs. It’s constantly an up and a down. You never know how long you’re up or you’re down. For example, today is Monday and I have not showered since Thursday morning. I’m wondering if it was Wednesday night, and I just did my hair Thursday morning, either Wednesday night or Thursday morning. I am just simply too tired to shower- it is going to take way too much energy too many spoons, and so it’s just- I can’t put that energy into showering, so I’m dry shampooing it for a while.
I have washed my face and brushed my teeth though! I’ve just not washed my hair or showered. But, for example, that would be what I would say is an example of living with a chronic illnesses when you simply do not have the energy to shower. And this is a regular occurrence. You know it might be that like, next week I go through the exact same thing. I mean, I thought about showering tonight but I’m not gonna lie. I’m really considering just postponing it until tomorrow. And I went to bed at 8:30 p.m. last night. I’m still tired. So I think when it is affecting your daily life is what also makes it chronic illness- when it is over and over again, repetitive and not just like when you have the flu- you know that there’s an end point… with me not feeling great and low energy the last several days, I have no idea when that’s going to be over. It might be that I wake up feeling more energized tomorrow or it might be two months from now that I wake up and feel more energized. So I think that would be part of the chronic illness.
What do you think, Chelsea?
So as someone who does not have a chronic illness, but I worked with a lot of people that have lots of friends like Cassie, that have chronic illnesses. I would say that it’s something that once again you’re not gonna have a cure for. And I think that it’s tricky in the fact that there’s not like a guaranteed treatment plan or symptom monitoring plan.. like for Crohn’s disease- What works for one person with Crohn’s might not work for another person.
And so I think, figuring out exactly what that means for you, and that trial and error, and taking it day by day. I know when I’ve done personal training or Pilates with individuals that have chronic illness or done some coaching even- it’s a lot about well, how do you feel today? What do you need today? What can we do to maybe help you keep feeling better or if you’re not feeling so good what can we do to help you feel better? I know it’s one of my personal training clients that had a multiple chronic illness diagnosis. I never knew what what version of her I was going to get. I never knew if I was gonna get the version that I could kick her ass and I could really push her. Or if I was gonna get the version of her that was so tired and so drained that walking around the track was pretty much all we were going to dio, which was perfectly fine. There’s nothing wrong with that.
But I think a big thing is just it’s different struggles that you’re getting day by day that again have the ups and downs day by day. And so it just kind of depends on how you’re feeling.
Yeah, I think that’s a really good point. Because even as one with the chronic illness, you don’t know how you’re going to feel when you wake up in the morning and even when you wake up and have your coffee or your tea, you don’t know how you’re going to feel two hours from then or how you’re going to feel that night.
And so having people who understand that lets you be wherever you are at that point is a really gift, you know. And also allowing yourself to feel how you need to feel.
Oh, so those were kind of our definitions of what a chronic illness is… And we did some research on the Googles, which is not always a great place to go for health information. But we did find some definitions that we thought were kind of interesting. So we would like to say that we looked up “chronic illness”, but a lot of the definitions we were getting were for “chronic disease”, which is something we’re going to talk about a little bit too.
So Medicine.Net describes a chronic disease as being “something that lasts three months or more, and generally cannot be prevented by vaccines or cured by medication and will not disappear.”
So basically something that you’re gonna have forever and that can’t be cured.
So Wikipedia has a definition that “a chronic condition as a human health condition or disease that is persistent or otherwise long lasting in its effects or a disease that comes with time. The term chronic is often applied when the course of the disease last for more than three months. Common chronic diseases include arthritis, asthma, cancer, COPD, diabetes and viral diseases such as hepatitis C and HIV or AIDS.”
So the World Health Organization states that “a chronic disease is not passed from person to person. They are of long duration and generally slow progression, and they have four main types. Cardiovascular disease such as heart attacks and stroke cancers, chronic respiratory diseases like chronic obstructive pulmonary disease, COPD, as well as asthma and then diabetes.”
And then the C D. C. The Center for Disease Control has chronic diseases defined broadly as “conditions that limit one year, or more, and require ongoing medical attention or limit activities of daily living like heart disease, cancer, diabetes, and the CDC says it’s often caused by poor lifestyle choices.”
I was like, totally, really liking the C. D. C’s definition until that last one.
Right?! It’s like “often caused by poor lifestyle choices”, which I call bullshit on that one. And even looking specifically- heart disease, Type two diabetes, potentially some cancers, I think that those maybe could have some connection to lifestyle choices. BUT likely they are NOT because of a lifestyle choice.
And there’s so many other diseases that aren’t to do with lifestyle choices!. If you think of Children that have chronic disease or very like hereditary DNA stuff that you can’t control, or environmental triggers that triggered your disease.
And so there’s just some pretty interesting definitions, and I think the thing that I found the most interesting looking at these definitions is they really did kind of focus on, like, heart disease, cancer or respiratory diseases, or like things like diabetes. But they weren’t talking so much necessarily about like, autoimmune diseases or genetic diseases.
Or, just things that the chronic illness community sees, but they’re not touched on these definitions.
Like like World Health Organization or CDC. Massive organizations in our world are not really touching on what a chronic illness really is. They have a very small view, which I think they connect to the fact that people with chronic illnesses have such a hard time getting information from our current health care system, right, getting information and also and often feeling as though we have to defend ourselves that we’re not hypochondriacs. This isn’t all in our heads. We are feeling this way. This is going on and this is really happening in our bodies.
I think that it’s interesting that you brought up the is this going on in our heads concept because we also we’re asking ourselves, well are mental health issues or mental illnesses also considered a chronic illness?! So we did find a definition from psychiatry.org that said “mental illness is a medical condition just like heart disease or diabetes.”
But we also found another source from CCHR.org, which stands for the Citizens Commission on Human Rights. And they say that the “psychiatric disorders are not mental diseases. There are no lab tests, brain scans, X rays or chemical imbalance tests that can verify any mental disorder like a physical condition.” And I definitely had some feelings and thoughts that came up with this especially the second definition, because I know that there’s a lot of people in the chronic illness community that their lab tests are coming back clear, their MRI’s, their CT scans, their X rays are coming back clear. But they’re still not feeling the way they know that they should be, and that they know that there’s something wrong. And so I think I just saying like Oh, you only have a disease. If so and so tests come back positive or negative, its super limiting.
That’s a great point because there’s many of us out there that know that we’re living with something chronic illness or disease, or chronic mental illness or disorders.
Chelsea and I both feel like mental health issues, mental health disorders, mental health illnesses are under that chronic illness umbrella. Especially when you think of the way that it can impact your daily life- your body. I mean, when you’ve got anxiety, you lose feeling in your hands you want to throw up, you feel like you could faint. Some people get physical chest pain. You end up in the emergency room thinking you’re having a heart attack. I mean, you know, to say that it doesn’t affect you is or that it’s not and a chronic illness is crazy!
Then we found- Satar Psychological Sports Center, so they really started talking about the difference between disease and illness- these are clinical psychologists. So they definitely are looking at it from a mental health perspective as well. One thing that they said that was super interesting is that “disease is something that needs to be cured. Illness is something that needs to be managed.”
And so that kind of felt like disease is something that potentially has a cure to it. Illness is more something that you’re dealing with on your day to day basis that you’re having to kind of manage the symptoms a little bit more. And we thought that was really, really interesting.
Yeah, I really like this quote from them. “According to this way of thinking disease is something that needs to be cured, such as an infection injury, toxic exposure, cell degeneration etcetera. Illness is something that needs to be managed such as feelings of pain, discomfort, distress, weakness fatigue, etcetera.”
Which, one of the things that sticks out to me is that illness need to be managed- and may not be measurable, like with those tests or scans- how does one measure or test the pain, discomfort, distress, weakness or fatigue.
Yeah, and so that’s kind of an interesting distinction that sticks out to me, too. Well, it’s so much more personal, like if you’re someone that’s got a high pain tolerance then on a scale of 1 to 10, you might never It might take forever for you to get to the 10 that really really intense pain. But if you’re someone who maybe has, like, a lower pain tolerance, like your 10 is gonna happen really fast and it’s it’s so subjected to how you feel that really, How can you quantify fatigue or pain or discomfort or all those things?
Because it’s what you’re feeling within yourself and what you’re living with and what you’re used to. I mean, if you’re living every day at, like a one or two on the pain level, fatigue at, like a three, then you know when you get when you hit those sixes or something that’s six might be different from someone who isn’t living in a one or two. If you’re someone who doesn’t live with it every single day, then, yeah, the moment you go up to like, three or four, your body is gonna go-Whoa! All right. This this is weird. I’m not a fan.
Yeah, so they on to also talk about, in the same article, that disease and illness are not necessarily mutually exclusive. They often occur together. And another thing that they started talking about was that traditionally trained medical doctors are trained to treat diseases. They’re not so much training to treat illnesses, which I think in hearing experiences for other individuals that have chronic illness that I’ve talked to you or even just my experience. You go to the doctor, you tell them their symptoms and the doctors either have a test to give you that says that you have this or that. Like if you feel so bad and couldn’t go to the doctor because I have the flu. They give me a flu test. It’s either positive or negative, and then they based off of that result they give you a certain treatment. Mhm. But if you’re managing those day to day symptoms, they’re not really trained how to do that, right?
And so that’s where maybe you find some of the struggles of having a chronic illness with our more traditional health care practices They just don’t have the tools in their tool belt unless they have taken their time to get themselves and get additional training and education. And so finding more holistic practitioners could be more successful. And I know that’s something that when we talked to some other people in our community that they’ve had success with, we did a support meeting WEBINAR presentation just a couple weeks ago with Abby Boyd One of our members in the Spoonie Hub, our spoonie community, she’s had pots for quite a large time of her life, and she doesn’t really go to the doctor. “Yeah, yeah, she said.” She’s like, “my disease is incurable.” And so she’s like “I’ve learned how to manage it.” is what she said, which was really interesting because it fits in so much with all of this research that Chelsea and I have done.
And speaking of finding you know, the holistic approach and everything, in that same article, there was an interesting thing that says, traditional medicine does not often make the distinction between disease and illness, which leads to unnecessary and unwise surgeries and prescriptions in a doomed attempt to cure an illness. This has been a hope and belief that Western medicine would cure all disease and illness. But it is becoming increasingly obvious that this is simply not the case. And that if your loved ones begin to try to make this distinction and seek out the proper healthcare provider for what ails you- Alternatives to Western medication can often be the best way to treat an illness, which is really interesting because they are talking and trying to teach you that you that do have to treat the illness as well as the disease on maybe seeing them as not mutually exclusive.
And that was pretty interesting to me., in a lot of ways, I’m on medications to treat my disease, but my illness is defined by this, which kind of says most of my symptoms are not being treated and I constantly feel like I’m having to defend myself to say “no, I’m still ill. You know, I have this disease, that also is NOT managed, but I’m still ill.” So that’s that’s pretty interesting.
I think trying to define a chronic illness is really challenging because I think everyone has their own experience of it, and putting one blanket definition on something that can truly be so broad is really challenging. And so sometimes I feel like by trying to put a specific definition onto what a chronic illness is, and not in focusing less on the experience that the people are having and just trying to like medically define it. It almost takes away from that experience of what people are truly going through every single day, so kind of start wrapping some of those ideas up. One thing that Cassie and I are really passionate about doing is helping to normalize chronic illness and we talk all the time about maybe things that I’m going through or things that she’s experiencing. And we really come to realize that we both go through the same shit just on various different levels. So really anyone that has a chronic illness is just like everyone else.
We’re all, at a basic level, the same. We just experience life on different levels. So, like, for example, I still have to think about what I’m eating and if it’s gonna make me feel good or not. Like I love me some spicy chicken sandwiches that Chick fil A. But there’s like a 50/50 chance I’m gonna feel completely terrible afterwards. But for me, if I feel terrible, it’s for, like, maybe 30 minutes or an hour or two, and then it’s passed through my system and then we move on and it’s fine. But Cassie if you eat something that could affect you for weeks or longer, I mean, it could put you out for days. It could it could affect you for weeks.
And it can just sometimes, when you have a chronic illness, be at a bigger, more amplified level. More life affecting level. Not to say that for those who don’t have a chronic illness that the fatigue and brain fog you’re experiencing isn’t valid. It’s just sometimes maybe…. Maybe it’s less challenging to get through the day, possibly a part of it. I think kind of the longevity of those symptoms, not that I haven’t had weeks where I feel like I’m tired entire time, or I’m experiencing a high level of brain fog, but it doesn’t last months and months, and that was one thing that I did kind of did agree with when it came to the chronic disease definitions was something last three months or more, because chronic means it’s lasting for a long time.
And so for me I might have brain fog, and it might last a week or so, but it’s not lasting three months.
Yeah, and that kind of makes me think about when you can push your body to limits to, like for you going through grad school. And you could, like, push yourself to these insane, you know, limitations for your body, where you can keep going, can keep going on and then maybe have periods where you have to shut down and recoup. And then you could keep going. Keep going. I think for those of us with a chronic illness that would have looked very different. And yet at that time, I’m sure you felt stressed, fatigued and tired and that was very real for what was going on for you .But maybe you knew there was an end point.
I would agree with that, I think, and talking to some other individuals that have chronic illnesses that are going through graduate programs and have very busy schedules. Their day looks different. What they have to do during their day is different than if someone like myself who doesn’t have that diagnosis. It’s still tough for both for both parties. But it’s different, and I think that the best thing that we can do for anyone with a chronic illness or just people honestly in general is just know that the experience that they’re having is completely valid and that it is their own. And maybe you’re experiencing something different. Like, I know one thing I struggled with when I was in college is I don’t like this saying, “Oh, I’m just so busy” because everyone’s busy. It doesn’t matter if you were working 80 hours a week and never have time for yourself. Yes, you’re busy but also the person that’s working six hours a week and has other stuff going on their life that might on the outside look like they don’t have the same time constraints of others- like everyone is busy because busy is again, a perception that you have for yourself.
I love that.
And so it’s about the experience that you are having. And so I think just if you’re someone to chronic illness or someone that’s not having compassion for yourself and the people around you and what their experience is going to be really, really valuable, whether or not they fit into a certain definition of current disease or chronic illness or something like that, yeah, maybe don’t put yourself in a box or don’t put someone that you know with a chronic illness into a box, that might be one of the nicest things- is allow them to be what they’re experiencing.
Yeah I think that’s really true. So we would love to hear how you would describe being chronically ill. Have a fantastic day way. Hope you enjoyed today’s episode. Please write us a review to help us reach more people like you.
-Cassie & Chelsea