By Latasha Doyle

When you have a lifelong condition like Marfan syndrome, your daily experience looks different from many — and different from your own experience, even a day or a week ago. Some days you’re hopeful and energetic; other days, you’re drained and discouraged.  

We deal with daily symptoms like pain, fatigue, dislocations, migraines, palpitations, and more. We have to navigate doctors’ appointments, trips to the pharmacy, physical therapy visits, and calls to insurance. There’s also the mental load of facing a lifetime with this condition. We have to consider surgeries, navigate health care, deal with injuries, and (of course) face our mortality. All of this weighs heavily on our minds. That’s not even touching the “normal” parts of everyday life, like working, raising kids, being a community member, cooking, cleaning the house, walking our dogs… 

And all of that was before the pandemic began. It’s no wonder that many people with chronic illnesses and disabilities are just plain tired. I know I am. Here we are, the third year into a global pandemic, and who knows how many variants, and I know that many of us are facing a new challenge to our health: our mental health. 

A mental health check-in 

With all of that in mind, I want you to take a minute to check in with yourself. Did everything I shared above about the different plates we spin daily trigger anything? Did it make you sad? Angry? Overwhelmed? My intention wasn’t to trigger you but to remind you that you already do so much. In a society that constantly feels like it’s telling you to do more, it’s hard to remember that we are doing our best — and our best might look different from others. 

I know that, for many people, talking about “mental health” is synonymous with “being crazy.” But that’s not what it is. Our mental health is an important part of our overall health; it’s how we cope with events that happen to us, how we support ourselves, and how we interact with the world around us. Mental health matters. 

Before I write any more, though, I want to remind you that you’re not alone if you were struggling before the pandemic. You’re not alone if the last two years of your life have been the hardest you’ve faced. You’re not alone if you’re scared, angry, or disenchanted. Whatever your experience, and however you’re handling it, it’s valid, and this community is here to support you.  

With that said, I’d love to dig more into Marfan and mental health and how we as a community can start to spread awareness for this facet of our experience, too. 

Marfan isn’t just a physical condition 

In my particular experience with Marfan syndrome, I deal with daily pain from (what one can only assume is) fibromyalgia, scoliosis, and joint inflammation. I am creeping closer to aortic surgical intervention. And I have made many modifications in my daily life to accommodate a body that doesn’t work as many “healthy” bodies do. I’ve had to leave a career I loved (because I couldn’t handle the physical work involved), move from a house I loved (stairs are the worst), and limit traveling even before the pandemic (because it’s so hard on my body and I can’t be too far from a cardiac care center). 

That’s just one-half of the equation, though. For most of my life, I’ve dealt with anxiety. I believe I had my first anxiety attack at the age of 11 — I was afraid I was going to die. I lost my aunt in 2012 to Marfan syndrome, and I dealt with something new: feelings of sadness and grief I couldn’t overcome. After that, I also dealt with a lot of emotions in my marriage. I felt like a burden, and I didn’t want my husband to take care of me. 

After getting to know many people in the Marfan community, I’ve heard similar stories. I know I’m not alone. Science also indicates that this is common with our condition as a result of our experiences. 

There has long been a connection between a Marfan syndrome (or other connective tissue) diagnosis and anxiety and depression. While there’s no indication that our connective tissue conditions cause anxiety and depression, it’s easy to see how they go hand-in-hand.  

Let’s take a moment to consider how these mental health conditions could affect or even exacerbate our experience living with Marfan syndrome. These are side effects of anxiety and depression that go beyond the “feelings” side of things. 

• Anxiety: Increased blood pressure, increased heart rate, lightheadedness, lack of appetite, avoidance, social withdrawal, etc. 
• Depression: Oversleeping or insomnia, fatigue, lack of appetite or increase in appetite, cognitive dysfunction, recurring thoughts of death, unexplained pain or headaches, etc. 

If we’re only treating our physical conditions, but not addressing the real mental health concerns in our community, we’re only treating half the problem. Our mental health matters. What’s more, our mental health care matters.  

Here’s just one example: If you’re facing elective surgery or have recently had surgery, new studies show that mental health care is critical to your recovery. Studies for other illnesses also show that support for anxiety, depression, and other mental health concerns can improve outcomes and increase overall health, reports of wellbeing, and resiliency. 

By only talking about the physical elements of this condition, we’re ignoring a major part of the experience — one that could risk our physical health, too. 

Surviving and (hopefully) thriving 

Some of you might be reading this, hoping I’ll give you tips on how to navigate mental health challenges. Sorry to disappoint. The thing is, just like our physical health, it’s hard to make recommendations on what works because everyone’s mental health needs are different. 

For me, mental health care looks like having a therapist I see every month (and whom I saw every two weeks for the majority of 2021). It looks like reading, taking walks with my husband, and using the recumbent bike and the reformer at the local rec center. It looks like 25mg of Zoloft that I take every night before bed to help stave off the earth-shattering panic attacks that the last two years gifted me. But what works for me doesn’t work for everyone — nor should it. 

When you’re just “surviving” 

Over the last two years, I’ve learned that sometimes, we have to do what we can to get through a day — and some days, we have the capacity to bring in a little more joy. If you’re in a place right now where you feel like you’re just “surviving,” I urge you to find a local therapist. You can ask your employer or your health care provider if there are any “emotional wellness” benefits to your plans, or you can search Zocdoc for a virtual or in-person local therapist. 

You can also talk to your doctor about safe exercise and ask a friend or your partner to do it with you. You can talk to a friend or family member about how you’re feeling. You can write it all down or go scream into a couch cushion (my preferred outlet on “survival days”). My only request: Don’t try to navigate feelings of overwhelming fear or sadness alone. There are people who can help — and it will change your life. 

On those days, you feel like you’re “thriving” 

And for those days where you think, “Hey, maybe the sun is shining a bit more than usual,” make the most of it. Dance around the kitchen, make something yummy, sit outside, play with the kids or your pets, hug your partner or a friend. I know that we are still in the midst of a pandemic that makes it hard for us to protect our health while still staying connected to those we love, but there are ways to experience joy within your “bubble” or at a distance.  

The big reminder, whether you’re surviving or thriving? What you’re going through right now is a human experience — even people without Marfan syndrome face challenges to their health and mental health. It’s a universally human experience right now. You are not alone. 

Raising awareness for the Marfan experience 

I know that February is Marfan Awareness Month, and what an important month it is. In my lifetime alone, I’ve seen the shift from minimal awareness to almost widespread knowledge of my condition. When I was younger, some doctors didn’t even know about it. Now, I can say, “I have Marfan syndrome” when I meet someone new, and many people will at least have heard about it. That’s incredible — and what an amazing thing for those of us living with this condition. 

However, knowing about something and understanding it are two different things. This is why I often say I am “out and proud” with my Marfan experience. I talk about the physical side of things, the mental side of things, and the challenges my family and I face daily. Why do I do this? Because I know that not everyone can, and not everyone wants to. 

You may not want to tell your entire Facebook friend list that you have Marfan syndrome or that you’ll be going through surgery soon. You may not want to talk about how you’ve had so much back pain lately that you’ve needed to find a scoliosis physical therapist. You may not want an employer to know about your condition. That’s all valid. 

For me, I share (and possibly overshare) my experience because I know that not everyone can. However, I would ask that you take a moment to consider one small way you can share more about your experience with someone this week or this month. Can you let a close friend in on how you’ve been feeling lately? Can you tell a family member about your scheduled appointments and what they’re for? Can you share a Facebook post to this article? Can you share a victory you’ve had with your treatment or something Marfan gave you? 

Any little act of sharing information can make a huge impact for someone with this condition — and also give a new perspective to the people who love us. Small victories have a big impact, even on ourselves. Connecting with someone about your experiences can be cathartic and even good for your mental health. 

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