How to Stay Positive and Refuse to Let Your Illness Define You

In this episode, we will discuss how to stay positive and refuse to let your illness define you. Today, we have as our guest speaker Debbie Konrad. Debbie is a cancer survivor and common variable immunodeficiency (CVID) patient who refuses to allow chronic conditions to limit or define her. Debbie is a dynamic individual with a diverse background. Since 1990, she has owned and operated her own drapery business. She also taught ballet for a decade and later became a stay-at-home mom to two sons. Now living in the Chicago area, Debbie enjoys spending time with her five grandchildren, with another on the way in May. In her free time, she loves reading, traveling, gardening, sewing and exploring her passion for genealogy.

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Episode 12

How to Stay Positive and Refuse to Let Your Illness Define You

Hello and thank you for joining us today. My name is Abbie Cornett, and I am the patient advocate for IG Living magazine. This podcast is brought to you by IG Living magazine to give readers an opportunity to hear from healthcare experts on topics important to them.

Abbie: It’s my pleasure to introduce Debbie today. She was among the first patients I had the opportunity to work with when I joined IG Living magazine a decade ago. Debbie’s attitude toward her diagnosis left a lasting impression on me. She fearlessly advocated, “Don’t let your illness define you,” a message that deeply resonated with me. So much so, that I suggested she be interviewed for the magazine in 2015. It is this continued passion that led me to choose her for this podcast. Debbie, thank you for joining us today and tell you how much I’ve always admired you. Could you please share a bit about your journey with cancer and CVID? How did you initially cope with your diagnoses, and what strategies have you employed to maintain a positive outlook despite these challenges?

Debbie: I was diagnosed in 2008 with a rare form of lymphoma, and I subsequently received two years of Rituxan treatment for it. After I was done with the treatment, I was having a lot of sinus infections, and I knew that the Rituxan, because of the B cell depletion factor, could be responsible. So, I asked my doctors, and they tested me and discovered I developed common variable immune deficiency (CVID). They told me I would need lifelong infusions of immune globulin to fight infections.

So, for me, that diagnosis actually wasn’t at the time as daunting as the original cancer diagnosis. I think part of it was that when I was first diagnosed with my cancer, I was a very angry person — very angry at my body because I had done everything right. They tell you these are all the preventive things you can do, and I had done everything right and I still got cancer. So, my doctors were concerned about letting me know about this immune deficiency diagnosis. But my husband told the doctor when she called that he thought they’d be surprised at how well I would handle it. And I did, but that’s not to say that I don’t have my bad days. I had pity parties with the cancer diagnosis. I went through a period of some depression and great anxiety. I was diagnosed with PTSD and that involved me going to see a therapist who helped me greatly. The thing is, I was never a person who had experienced depression or anything in my whole life. I didn't even have baby blues with my kids. And then lo and behold, you’re faced with this this challenge.

It's very hard sometimes to realize that our bodies, as much as we can and do take care of them, that things go wrong — things happen, and what are you going to do about it? So, I started seeing a therapist, but they also prescribed me a mild anti-depressant. The treatments they give you for the cancer, high-dose steroids, do chemical things to your brain.

Abbie: I am just coming off a high dose of steroids, so I understand that.

Debbie: Right. But this was like ongoing for three months, and I literally suffered. People kept saying to me, “Oh, you’re going to be the Energizer Bunny; you’re going to love this!” Well, I got to a point where I told my husband: If one more person said that to me, I was going to smack them because I was opposite; it made me depressed, it made me have bad dreams. No one told me at the time they put me on them that this messes with the chemicals in your brain, literally. So, they did not tell me when I went off of them that I probably should do a slight anti-depressant for a little while because they have to correct all that goofy junk that's going on. So, once I got on the anti-depressant, it was like within days I literally felt like a cloud just lifted. It was the strangest thing ever. So, I’m an advocate now for the fact that seeing a therapist is probably a really good thing, especially if you're finding yourself bogged down feeling like you can't cope with this whole thing.

Also, I was kind of more the positive side person, you know? My whole life I’ve been that way — more of the cup half full cup full person. So, for me, I don’t call this an illness. I don’t call my cancer an illness. I don’t call my immune deficiency an illness. I have some other issues that I also am dealing with that I consider chronic conditions because they all are, and I think that looking at it with a mindset that you’re not sick, per se, helps greatly. Because if you are in the mindset that you’re sick — what do you equate with being sick? Oh, I got to go to bed, I got to do this, I got to do that. Whereas if you look at it as, OK well, this is like diabetes; it’s something you’re going to deal with the rest of your life. You have to find a way to make it fit into your life.

Abbie: I understand that exactly. I was just explaining something really similar to my kids because I’m getting over something. And they said something about, well, “your condition or your illness.” I said, “No, honey, I’m sick right at the moment; I have something.”

Debbie: Right, you have a cold, you have the flu.

Abbie: I have the flu. I guess I look at it more as like a passive underlying condition versus active illness at the time. And there is a difference. You definitely have to be active on that condition all the time and do what you’re supposed to do. But if you’re not actively sick at the moment, there’s a difference.

Debbie: And I think that for me it’s kind of like that philosophy: If you look at life in a way that when things are thrown at you, you can either allow yourself to be literally sucked into that black hole that just takes you into the Earth and in darkness, or you rise above it and you say, “OK. well how am I going to deal with this? How am I going to cope? What are my coping mechanisms?

Abbie: You literally just morphed me into my second question. You have been such a positive role model. How have you personally cultivated that mindset of resilience and empowerment through your journey? Because you’re one of the most empowered patients I have known.

Debbie: I would say it’s definitely been a process. Like I said, initially, I went through like a really dark period. My husband, for instance, kept saying, “Oh, I just want my wife back.” Because my mindset —part of it was chemical but part of it was this anger I felt. I mean, really there is no other word I can describe. I felt so betrayed by my body. And I think at some point you have to just start to realize you can’t be this, you can't be in that place all the time.

I had a therapist at the hospital that said something that really resonated with me. People kept telling me how strong I was, and I kept thinking to myself, “Well, you know, what choice do I have? I really resented the fact that they were telling me I was strong. So, I said this to the therapist, and she said to me, “But you are strong. You are here, you’re physically going through all these tests and this treatment to get well. We have patients who literally shut down. They sit on the sofa, and they just are ‘wo is me.’ They don’t see any sort of way through it. And they’re stuck they're stuck, and they do nothing to help themselves. They just make their situation worse.” So, I think that that probably was one of my moments where I did realize at that point that as much as I'm going to have to deal with this the rest of my life, I had to find a way to.

Another doctor said to me in the beginning with my cancer diagnosis that what’s going to happen is (because the cancer I have is not a curable form) you’re going to get to a point where you’re going to be able to put this in a box and put it away between the times that you have your doctor appointments and your tests. And it’s going to always be there; it’s always part of your life, but it’s not the biggest part of your life. And he was right.

Abbie: It just becomes part of who you, I don’t want to say part of who you are, but it's a component of who you are.

Debbie: I don’t want to be identified by this, but it is part of your identity as a person because this is what you’re coping and dealing with.

Abbie: You know you sound like you kind of had those “aha” moments. I think we all have had those moments. We have a lot of patients that we work with at IG living who because of their illness and because of their diagnosis, they can’t interact as actively as other people do and they’re facing some pretty significant issues with isolation and loneliness. How have you dealt with isolation and loneliness because of your illness? And how did you deal with it? What advice would you give people who are facing those issues?

Debbie: It’s funny. When we had originally talked, I thought about this question a lot. I feel like that first year before I had my immune deficiency diagnosis, I probably felt the most isolated then only because I was very sick. I almost died. So that in itself is very isolating. And then not being able to find doctors who could know what to do for me because of my situation, that was extremely isolating. And plus, I was so sick that literally I slept 20 hours a day. So that isolation is kind of an unconscious thing, I mean, I went through it, I dealt with it. But once COVID hit, for instance, I found it kind of ironic at that point that people were complaining about how much they had to isolate when this is pretty much our life.

Abbie: I was going to say, people with an immune deficiency been dealing with that for years.

Debbie: We are careful. I mean I don’t not do things, but I will say that when I was diagnosed with cancer – before I even had the immune deficiency — they told me I’s have to treat my life in a way that you know like that I was in chemo. I can’t do buffets, I can’t go on cruises. I mean, they’re not saying I can’t, but they’re saying I should probably not. So, what I do, like during flu season, I have a really good friend and we still go out; we eat lunch, we go to a certain place where we know we can eat the food there because we know the people who are preparing it. I’m careful but I still socialize. Like now, recently we’ve had a lot of family weddings and with the COVID thing, I have not been going to them. For the reason that the one I did go to I did get COVID last year. So, you know, you kind hedge your bets.

Abbie: Our patients have a lot of those moments where they can’t go to things — like I was when I first got really ill; I was shopping on the Internet before that was a thing because I was too sick to go to the malls. So how have you dealt with not being able to go to those family weddings and not feeling sad or isolated because of that?

Debbie: Yeah, I think that for me, I’ll be honest with you, I’ve always been the kind of person where I’ve been very comfortable in my own skin as far as alone time with myself. I have a lot of hobbies. I enjoy reading. I do a lot of stuff, so I can entertain myself quite well. My dad was in the military, and we moved every three years, so I’ve never had those really in-depth friendships.

Abbie: I was going to say I’m an only child, so I understand what you mean. I’m perfectly capable of entertaining myself.

Debbie: So that’s the thing, and I get it. And I think that for me the isolation factor, yes, I still want to be in contact with people, but I can deal with the fact that I'm not. I mean, like even now, I’ve always had a smaller circle of friends. They’re more true friends than acquaintances. So, for me, that hasn’t been a super big issue. But you know what, you can FaceTime. I have a very close cousin who lives about six hours away. We frequently FaceTime.

Abbie: That’s an excellent strategy. Just because you can’t physically see someone in person doesn’t mean you don’t have to give up on those connections.

Debbie: Right, and that's the big thing. This is what’s been wonderful about technology in that regard. You can connect with people — even people who live in other sides of the world. I have a friend who lives in Paris. She’s a young lymphoma survivor who almost died, horrible story. We FaceTime

Abbie: Technology has really, particularly with the pandemic, changed things. I’m going to roll into the next question: As an advocate for yourself and for people with your condition, (and you’ve kind of touched on this) refused to let your illness identify you? What are some of the practical strategies that you have found helpful in maintaining a sense of self-purpose beyond your health condition? And how do you balance your illness while also embracing other aspects of your life? Like you were saying you go out to lunch with your friend, you FaceTime. But how have you found that balance? It’s very hard for some people to do.

Debbie: Well, I think mostly, I like to go on walks — get out in nature. I know some people don’t have the energy to do that, but I just think you need to, first of all, stay off the Internet. Don’t be constantly going there to look for reason, for answers to whatever’s going on. Just talk to your doctors. I don’t do support groups; they're not my thing. Cultivate your own interest, your own hobbies. Like, I like genealogy. I do that sort of thing. So, I try to put my focus away from all things medical. There was a time when I had like a library.

Abbie: I think we all do when we are first diagnosed. We want to find out more. For me, information is control. And once I have the information, I can move on from that.

Debbie: Right. There was a phase I went through where I kept all the cards from when I was sick, and I would go back and read them because they were very affirming. You get to a point where you don’t need that anymore. And then, so little bits get chopped away and you throw that away, and then you replace those things with normal everyday things that you probably did before you ever were diagnosed.

Abbie: Or you find new things.

Debbie: Right. There's a lot of good online things nowadays. I’m sure there are probably book clubs online. I know, for instance, my interest is sewing. I can do classes online.

Abbie: I used to be a big gym maven. Well, the gym is not the greatest place to go. I love hiking. So, I’ve transitioned. I still get my exercise. I work outside training my dog. Even if you don’t have the energy, there are things that you could do like the online book club. So that’s an excellent idea.

Debbie: Yeah, there are a lot of different things that you can do. And genealogy, for instance, there's a font of clubs and stuff.

Abbie: There are. My husband’s into genealogy.

Debbie: So, I mean, it’s just very interesting. History is one of my favorite things so it all ties together.

Abbie: Your story is so inspiring — in your resilience that I’ve seen over the years, and you have always faced medical conditions that have come up head on and moved through them. What advice would you give to someone who is newly diagnosed with a chronic illness who might be having some real difficulty coming to terms with that condition? And how would you advise them to work on a mindset that’s similar — one of empowerment and positivity? I know you mentioned therapy is a very good step. Do you have any other suggestions?

Debbie: Well, cultivate your friendships. Like my case: I had a friend who is a cancer survivor and she’s been one of my biggest advocates. Our friendship actually is probably cemented more because of this — because she’s a two-time cancer survivor. I think you can maybe seek out people who have similar situations.

Therapy is really good. Therapists are an unbiased source. You’re dealing with your family and your friends…

Abbie: Which can be frequently more difficult than the illness.

Debbie: It’s very stressful. My husband, for instance — especially when they’re control freaks, or they think they can fix everything, and they can’t fix this. And this is why therapy is very good because that’s a very unbiased person who’s removed from your situation. They can give you coping strategies.

And, for some people, support groups might work. My experience with support groups has not been so great. You have to find a good one.

Abbie: Because you’re probably more self-reliant because of your childhood and your upbringing, maybe support groups weren’t your way of coping, but they could be for other people.

Debbie: So, it’s kind of like doing the book club thing. For me, my thing with the support group was, I found that there was a lot of negativity. There people were like ‘oh poor me, poor me’ and not really being supportive of everybody else or talking as if they just wanted to be there and be the star.

Abbie: A good piece of advice might be research and find what’s best for you as an individual. Like for me, hiking, therapy, support groups. But it’s whatever makes you feel better about yourself.

Debbie: Try to take your focus away from you being the so-called condition, like I said. Try not to think of it as an illness. We all get sick. We do get the flu; we do get colds. But to me, sick is that like we were just talking about. I’m not sick every day. I have a condition.

Abbie: You have a condition every day, but you’re not actively ill every day.

Debbie: Exactly, and you don’t want to become your cancer or your immune deficiency. You need to find a way to deal with it in your life, but you also need to find a way just to enjoy life. Because what’s the point? You’re working on finding help and doctors and treatment and everything. The reason why you’re doing that is because you want to be able to have a life that isn’t defined by…

Abbie: I remember having that exact conversation with my immunologist. You remember that I was a state senator for eight years, right, and before I ran, he was like, “Is this a good idea?” And I’m like, “I don’t know if it’s a good idea, but it’s what I need to do for me.” And I will work the rest of that in, if that makes sense. I will make my illness fit my life, not my life fit my illness.

Debbie: Exactly, and I think that’s what people need to realize.

Abbie: It is whatever their capability is. Because I’m fortunate. I’m not as sick as a lot of people are. And, you’ve had a lot of illnesses, but you’re still healthier than a lot of people. And you have to tailor your condition and your lifestyle to one another.

That brings us me to my final point. I’ve always looked to you as my one of my patients that, I’m like, look at how well she has done and look how well she does. You’ve always been very into advocacy, and when we talked on the phone a couple weeks ago, you were saying you needed to get back into it a little bit more. What are your aspirations for yourself moving forward and for the broader community of individuals facing similar challenges? How do you envision continuing to support both yourself and others in the years to come? And are there any specific initiatives or projects that you would like to work on?

Debbie: You know, to be honest with you, I was thinking about that question, and I really haven’t got to the point where I’ve given it a lot of thought. I mean, I will continue to contact my elected officials when there’s an issue that comes up or that’s being raised as far as legislation.

Abbie: That’s a very valid point.

Debbie: That’s kind of pretty much what I've been doing. Because, like I said, I’m not a person who does the walks. I try to find a way to give back and to be involved. It’s like with the cancer thing, I’ve volunteered as kind of a mentor for people who are newly diagnosed. I’ll talk to them and that sort of support thing. But I don’t know that I want to be the person who is the advocate as far as that’s my whole life.

Abbie: Like you said, you encourage people to write letters when there’s a legislative issue.

Debbie: Right. I have I have an Instagram page where I post stuff and I say, “Could you please do this.” I do the same thing on my Facebook page. I’ll say, “This is coming up. Would you mind writing a letter or signing a petition.” I mean, basically I think that’s a big thing. That’s how our voices are heard.

Abbie: That’s such an important point. A lot of people who are patients don’t realize how important their voice is — particularly to the legislators or people who have the power to make decisions about access to care. And even if you can’t or aren’t physically able to join walks or actively be in the community advocating, you can write letters, you can do social media, you can mentor people who are newly diagnosed. There are so many ways and opportunities to give back to the community.

Debbie: It’s true, and another thing too is that when you’re newly diagnosed with any condition. A friend of mine runs an organization that he started called ??? angels, and he said that the people who come to work for their organization, if it’s cancer organization, they in about five years’ experience burnout. I think that probably happens to a lot of us. When you go through this, you’re going through phases, and you do get burned out. You can’t do illness — cancer — all the time. You just can’t; it’s not healthy. I found that really interesting when he shared that with me because I was at the point where I was doing the mentoring with this organization, but then I needed to pull back for me.

Abbie: Again, it’s all about what is right for the individual and at what time for that person — that balance. Debbie, I want to thank you so much for joining us today. I will continue to follow you and hope we have our ongoing conversations every few months like we do. I want to thank you so much for agreeing to do this today. you have such a unique perspective as a patient that I wanted you to be our first patient we highlight on our podcast. A little bit like you were the first person I suggested, what 10 years ago now, for the patient highlight in our magazine.

Debbie: I have that right in front of me right now. I pulled I pull the magazine out.

Abbie: I did too. Funny!

Abbie: Listeners, thank you again for joining us today. Additional information regarding this podcast can be found on our website at www.igliving.com. If you have a question that was not answered, please contact me at acornett@igliving.com.

Look for the next IG Living podcast announcement on our website for the opportunity to submit your questions.

IG Living Advocate is a copywrite production of IG Living magazine, published by FFF Enterprises, the only magazine for the immune globulin community comprised of patients who suffer from chronic illness and their caregivers.

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How to Stay Positive and Refuse to Let Your Illness Define You

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