As more awareness for chronic illness and disabilities is becoming more prominent through podcasts, books, TV/movies and social media, one of the topics I don’t come across often is the mental and emotional toll that people with chronic illness and or disabilities face on a daily basis. We see, hear or read personal stories about the fatigue, pain and suffering that people face regarding their physical symptoms; but it’s hard to get a glimpse into their mind and emotions. How are they feeling beyond their physical symptoms? How are they navigating the invisible toll their illness has? 

The mental and emotional journey of a chronic illness, disease or disability is significant. You might have heard the phrase, “the mind-body connection” at times, and it’s true. Whether you struggle with chronic pain or not, the mind and body is connected. For example, if you’re feeling stressed, angry or overwhelmed, you may experience a physical sensation of your jaw clenching, your chest tightening, or your stomach cramping – all of which are a physical reaction to stress, an emotion we feel or experience. 

I’d like to talk about my personal journey of  the mental and emotional toll I’ve experienced, particularly with Crohn’s Disease, and shed light on how this disease not only impacts my physical health, but also my mental and emotional well-being. The mental and emotional toll consists of heightening anxiety, fear and worry around activities outside of my comfort zone (aka my home). This includes social gatherings, making plans in advance or spontaneously, the fear of missing out – all of these examples intertwine with the mind and body connection concept, because if I’m experiencing physical symptoms, I develop more fear, worry and anxiety around doing these activities. This often results in showing up late, canceling plans last minute, and an immense feeling of shame, guilt and sadness. 

A big factor for me with my mental health journey, aside from anxiety, is my debilitating OCD symptoms. Ruminating, intrusive thoughts intensify when I’m experiencing a flare-up or excruciating pain with symptoms of Crohn’s Disease. Managing these thoughts and obsessions is something that I’m actively working through in therapy, but it takes more effort for me to navigate the mental and emotional toll while I’m experiencing a setback with my physical health. 

One of my personal struggles I’ve dealt with over the years of navigating through the ups and downs of my holistic health journey is that everyday is extremely unpredictable. For someone who is a Type-A planner like me, this becomes immensely overwhelming, and ultimately impacts my mental and emotional health. Of course I want to see, do and experience as much as I’d like to in this lifetime; but the reality is, my mind isn’t making that decision for me, my body is. Meaning that, if I have an ok day or a good day, it doesn’t guarantee that tomorrow will be similar – it could be worse. This concept impacts vacationing and other experiences that I’d like to participate in, and I start to feel very overwhelmed as a result. 

I also struggle with burdening others with my problems, which is why I end up venting it out on my podcast or privately with my therapist, so I’m not feeling judged. It’s not just a struggle because I’m a people-pleaser, it’s because I don’t want others to feel the weight of my problems, especially if they can’t fix it or solve it. I don’t want them to feel that pressure. I recently had a vulnerable and emotionally in-depth conversation with my husband. I asked something that has been weighing on my mind, and said, “What if I can’t give you the life that you want?” My husband knew about my health issues in our early stages of dating almost nine years ago; but even after all this time, I still worry about what our future could look like. I’ll feel awful if he will have to take care of me someday, because I know the reality of my health, and sometimes, there are days when I can’t even take care of myself, let alone another person – not because I don’t want to, it’s because my body is too depleted and just getting out of bed is a victory for me.

Speaking of victories, I wanted to share a few suggestions that have helped me when I was feeling my lowest mentally and emotionally. Because let’s face it, there will be ups and downs, highs and lows, and the reality is, there will be days when just getting out of bed is a huge win. 

• My first suggestion is, give yourself grace. Treat yourself like you’d treat a loved one. I used to be so hard on myself and put so much pressure on myself to get moving and be active, even when my body was begging for rest. I thought being active would help reduce my stress levels, but instead I felt even more weak and anxious. 
• Which leads me to my second suggestion, listen to your body – your whole body –  the physical, mental and emotional parts. Rest, relaxation and self-care will look different for everyone, but what works for you is good enough. 
• Lastly, and this is something I’m holding myself accountable to, don’t be afraid to ask for what you need. Asking for help is something I personally dread and often follow up with an “I’m sorry to bother you,” or just over-apologizing in general. Asking for help is valid, and something that we shouldn’t shy away from doing. Think about it this way: If a loved one asked you for help, no matter how you were feeling, you’d naturally want to help them, right? So, put yourself in their shoes and remember that they’ll want to help you, too. 

If you don’t have a chronic illness or disability, here are three things to keep top of mind when navigating through a relationship (whether it be platonic or romantic) with someone who has a chronic illness and/or disability:

• They didn’t choose to have their illness. A chronic illness or disability is not a choice, and it isn’t something that will just go away – for some illnesses, there isn’t a cure. Let this statement be a reminder for when you’re feeling frustrated, when your patience is tested or when you’re starting to pass judgement. I had a relative say in an argument that I throw my Crohn’s disease in peoples faces for attention; and at first, that comment really hurt my feelings. Something valuable that I learned in therapy is the saying, “people’s behavior is about them. When they show you who you are, believe them.”  It made me realize that not everyone is going to accept your illness, especially if it takes attention or focus away from them and their life. 
• Just because someone doesn’t look sick, or you can’t see their illness through your own eyes, that doesn’t mean they’re fine or feeling well. There are illnesses and diseases that are invisible. For me personally, I’ve heard the phrase, “at least you don’t look sick,” more times than I can count. I’ve experienced family members, friends and co-workers throughout my life who didn’t fully know or understand how I felt, and although I don’t expect them to fully know or understand (it’s not their responsibility), I wish they could have had more patience, grace and compassion with me when I was struggling. This proved to me that there needs to be more awareness, education, resources and support so that others can become more mindful and self-aware. 
• The greatest thing you can offer someone with a chronic illness or disability is support. The idea of support can feel overwhelming to someone who is generally healthy and doesn’t know what it’s like to be in your shoes, and that’s understandable. Support doesn’t have to be scrambling to find a solution to a problem you can’t fix. Instead, support can look like sending a text message to tell someone you’re here for them if they need anything, or it can be a small, kind gesture to show that you’re on their mind. One of the things most people with chronic illness/disabilities feel is isolation. We don’t want to burden others with our problems, and we can sense that people tend to distance themselves if they feel like they’re unable to “help” in any way. But what they don’t realize is, help doesn’t have to be finding the cure or figuring out how we can be pain free, it just means allowing us to feel seen, heard, valued and appreciated as people. 

I hope you found this information to be helpful. If you’re struggling with a chronic illness or disability, remember, your illness/disability does not define you. It may take time to believe those words to be true, and techniques like reframing and neuro linguistic programming can help shift our mindset, behaviors and habits to promote positive change and outcomes. If you’d like to learn how to incorporate these techniques to promote overall well-being, please schedule a free consultation call.