The following text is a truncated version of Medable Patient Advisory Council Chair Jenn McNary’s interview with psychologist and Patient Champion Member Dr. Lindsey Matt. Jenn and Lindsey were kind enough to film parts of their conversation for inclusion with this blog. Thus, we're pleased to present and recommend viewing the remaining portion of their interview using the videos placed throughout the article.
2020 has been a tough year for us all, with many spending time away from their families and feeling isolated this holiday season. This is especially true for caregivers of chronically ill children. In fact, research indicates that 40% to 70% of caregivers have had clinically significant symptoms of depression with nearly a quarter to half meeting the diagnostic criteria for major depression. Additionally, 35% of parents with chronically ill children meet criteria for clinical depression with 57% meeting criteria for what is considered anxious symptoms. .
With that in mind, Medable Patient Advisory Council Chair Jenn McNary (JM) spoke with Patient Champion Network member and licensed clinical psychologist, Dr. Lindsey Matt (LM), to discuss coping mechanisms and considerations as a caregiver for chronically ill children that can benefit many of us and our relationships with others this holiday season.
LM: I would love if you could start by introducing yourself and telling folks a little bit about you.
JM: Sure. I’m Jenn McNary. First and foremost, always in my introduction is that I’m a mom because I became a mom at 18. That is what I always introduce myself as. I have three sons that live with rare diseases of different kinds and I also have a healthy nine year old daughter.
LM: Thank you! Speaking to that piece, when you think about becoming a caregiver, how was that for you or can you speak a little bit more to that process or transitioning to mom and to caregiver?
JM: Yeah, so, it’s interesting because I’ve always been a really responsible person. I was a nanny; I was a babysitter, and, so, the transition to mom was pretty easy for me surprisingly...even at 18. I found that my mental health status of sort of dealing with a lot of anxiety and dealing with depression and things like that actually made me a better and more understanding parent. I understood when my kids were throwing tantrums. There were no pre-existing expectations for behavior. So, when I had a colic-y infant, I could really empathize with him. I found, even for me transitioning as a caregiver to sons with a rare disease...my sons were diagnosed when I was 21. Austin was three years old and Max was three months old. I didn’t have any preconceived notions of what it was going to be like to raise children so I just became the person who was raising children who were fatally ill.
LM: Speaking to that piece, just coming into motherhood and then learning it sounds about the illnesses that were going on with your children, what does the road of a caregiver look like for you from diagnosis and then over the years? Being in their lives and through that process?
JM: It’s interesting because, at first, it didn’t look any different than just being a mom. Very quickly it becomes being a protector. Being an advocate. There are doctors that don’t necessarily mean well or maybe they mean well but they’re just not having your child’s best interests in their mind. I had a lot of doctors say that there’s nothing you can do; just take them home and love them. All the way to doctors saying you may not want to get attached. You’re looking at a newborn baby and they’re saying, “That child is going to die. Don’t get attached.” So, I became an advocate for them to find the best care and a lot of it was external. In my mind, you know, just standing there blocking bad things that were gonna happen and then also moving into schools and being protective about what was gonna happen to them physically; whether they were being treated kindly; whether they were being picked on...and, so, it was a lot of defense. That was really our early years. As they’ve gotten older, it’s been raising them to be decent human beings so that other people will want to be around them because it’s harder to make friends; and have friends; and be in relationships when you’re disabled. When you need somebody to take care of you and it’s not your mom, that person doesn’t have to take care of you. And, so, teaching them really how to behave towards caregivers and how to be respectful. Sometimes, it’s tough love and really teaching them to be good citizens first and I think that that’s rare. I think that, a lot of times, these folks that depend on care can be really difficult to care for and I didn’t want that because I’m also a human and so, even though I have the best of intentions, I get irritated if I get woken up in the middle of the night over and over.
LM: And you had mentioned, I think, something so important. At some level, having some anxiety, things like that, coming into motherhood, coming into parenthood, can actually make you well suited for the job. I’m curious, for you, as you added on this caregiver role, what were some of the, I suppose, advantages and disadvantages of that? You mentioned the irritability. Sometimes it can be a little bit much. You’re a human being. I wonder, for you, some of the ways this impacted your mental health over the course of time.
JM: A lot of times I have said in the past, and I maintain, that having the boys really saved my life. For some people, it can be a pet; it can be a plant that you have to water at least once a week. Just knowing that I really don’t have the option of just losing it, especially as a single mom. Even on the days where, and certainly with bipolar disorder, I have days where I’m super mom and I’m super functional and our house looks amazing and immaculate and I’m playing boardgames and I’m really, really good. Then, there are days where I’m like, “I don’t even want to leave my bedroom.” I don’t have that option. So, in a way, being forced into reality has been good for me and I think that also having realistic expectations about moods has made me a better parent sometimes. We yell. We’re a family of yellers. I’m a yeller. My kids are yellers. We all swear but we’re all pretty good at apologizing. Being somebody with a mental illness, you become pretty good at apologizing. You apologize for forgetting something; you apologize for not showing up; and you apologize for being irritable. So, all of my kids know that forgiveness is an option and they know that people are human. I think sometimes that takes the pressure off of the people in your life.
LM: You mentioned your boundaries, things you do to look after yourself and I think that’s a very, very important part about this conversation about what it means to be a caregiver. I wonder are there resources you have found helpful for supporting your mental health or areas where it’s been hard to have the support you’re looking for?
JM: I guess the resources--Facebook and support group, please where people get it--and that doesn’t mean that everybody with a child with a rare disease gets it--and so I have an ongoing chat group with about six women that have children with Duchenne of varying ages and we’re in constant contact every day. We have Zoom calls. We live across the country but that’s where I go when I want to vent so, making sure you find your people. Also making sure you find your people that don’t have anything to do with rare disease, totally don’t get it, don’t understand it, don’t want to understand it, and so you don’t have to talk about it. I have a couple of those friends and, in fact, I have friends without children. Those are my favorite friends because we can be really selfish and self-centered and they don’t even know that it’s happening. Those are the resources. Also, of course, advocacy organizations and things like that are great if you’re struggling. For me, the biggest thing I’ve done for myself is keep myself strong since I have to do a lot of lifting. My kids are heavy. So, I’ve invested in exercise. I don’t love exercise but yoga; Peloton; treadmill; you name it is here and it’s in my face staring at me in my room and in my office. Making sure that I’m taking care of my health has been incredibly important.
LM: Thank you so much for speaking to all these different areas. Is there anything else that you would want to add or other things that we haven’t talked about already that are really important in this area?
JM: I think that it’s just important for everybody to realize, again, if I were speaking to caregivers or to people who both struggle with their own mental illness and then also are trying to take care of another human being, I’d say what I just said to a mom who wrote in a chat group about completely losing it on her kid in the middle of the night. Like, completely losing it. We’re talking screaming; crying; she may have even punched a hole in the wall. I remember that the comments were so unkind. “Get help. Get help. Get help. You’re a psycho.” Even from our community. I remember commenting and saying, “If these people are saying that they’ve never felt that way, they’re lying to you.” I really want to remove the stigma of struggling and that martyrdom, you know? None of us is built to care for people exclusively forever. That is not the way that we are made. We’re not those kinds of people. We’re not superhumans. I really want to work to removing that barrier, you know, to feeling what you feel.
LM: That’s an excellent point. Thank you so much.
JM: Thank you!
- If you or a loved one is receiving medical treatment, start by asking your hospital, center, clinic, or provider if they are aware of mental health resources for patients and/or caregivers.
- If cost or provider availability is a concern:
- Search “university counseling center” to locate low cost clinics in your area where therapy is provided by graduate students. These students are supervised by licensed professionals and often provide evidence-based care supported by current research.
- Search “sliding scale therapy near me” to locate therapists whose session cost is negotiable based on income. Many therapists are also currently practicing via telehealth, so consider searching outside of your town or city on sites like Psychology Today or Good Therapy to access a greater number of available providers.
- If therapy feels out of reach or you prefer the support of a group, robust communities for patients and caregivers alike exist within organizations and across Facebook, Meetup.com, and Instagram. These can be found by searching for “support group” or “caregiver support group” along with the name if you or or your loved one’s condition. Examples include:
- Family Caregiver Alliance - A list of support groups for adult and young adult caregivers of those with chronic health conditions
- The Cancer Patient - An Instagram community that takes a satirical look at life as a cancer patient or survivor
- The Dinner Party - A peer community for those in their 20s or 30s who have lost someone close to them