Living with chronic illness takes a toll on you, and not just physically; it is also hard on you emotionally. I’ve been in pain for nearly 20 years, and I have 6 chronic illnesses, so I know a lot about this. I want to talk a bit about mental health and chronic disease management, specifically why paying attention to your mental health is important, how your chronic illness can impact your mental health, and then my tips for managing your mental health when you’re chronically ill.
I’ve talked before about mental health and chronic illness, especially about how chronic illness can affect mental health. But today I want to talk specifically about the connection between mental health and chronic disease management.
As a reminder, I am not a medical professional of any kind. I write about my own experiences, and I always link to my sources when making statements about health. I indicate this by writing (x). The x is linked to the source.
The Importance of Mental Health
Before we get into the details, it’s important to explain what exactly we’re talking about. Something I see occasionally is people thinking that mental health equals mental illness. But mental health is like physical health in that it is a thing that everyone has, even though it wasn’t talked about a lot publicly until recent years. Or at least, it wasn’t a term used until recent years.
If you don’t have any physical illnesses or injuries, you still have physical health. Similarly, you don’t have to have a mental illness to have mental health.
The CDC agrees that it is separate from mental illness and says, “Although the terms are often used interchangeably, poor mental health and mental illness are not the same things. A person can experience poor mental health and not be diagnosed with a mental illness. Likewise, a person diagnosed with a mental illness can experience periods of physical, mental, and social well-being” (x).
So you can have no mental illnesses but go through a really tough time that makes for not-awesome mental health.
And that “tough time” can include your physical health getting worse and/or developing a chronic illness.
Living Life with Chronic Illness: Common Problems & Their Solutions
How Mental Health and Chronic Illness Impact Each Other
Imagine that you have an illness that will never go away. It costs thousands of dollars a year, and you may or may not have that money to spare. You also have to spend a lot of time at doctor’s offices, which might make your job unhappy with you, and even if you don’t lose your job, you might worry that you will. That is, if you’re healthy enough to work. Your family and friends may or may not stick by you in your illness, and if they do stick by you, they might not be very nice to you about it.
All this doesn’t set you up for very good mental health. Even if you don’t develop a mental illness, you will definitely have times when you’re down in the dumps, sad about your health, frustrated with the world, anxious about your future, and more.
Don’t just take my word for it. A 2000 study found that “The emotional dimensions of chronic conditions are often overlooked when medical care is considered” (x). Basically, “Doctors may be well equipped for the biomedical aspects of care but not for the challenges of understanding the psychological, social, and cultural dimensions of illness and health” (x). So while doctors might help your physical problems, they might not be able to provide support for the effects of those physical problems.
In fact, the National Institute of Mental Health found that “People with other chronic medical conditions have a higher risk of depression” (x). Not to mention that some illnesses can cause changes in the brain that lead directly to depression (x). Another way that your mental health might be affected includes depression triggered by illness-related anxiety and stress, a recent illness diagnosis, or even from medications (x). Frustratingly, “Research suggests that people who have depression and another medical illness tend to have more severe symptoms of both illnesses” (x).
The gist of it is that chronic illness is a risk factor for mental illness, along with family history, traumatic experiences, stressful life experiences (which chronic illness could be included in), using illegal drugs, and lack of social support (x). Because of this, it’s important that we chronic illness patients and the loved ones of patients take care of our mental health, whether or not we have a mental illness.
Keep reading the full post about chronic illness and mental health
Mental Health and Chronic Disease Management
Managing your chronic disease can be really difficult! Whether it be juggling everything you have to do in your life now or wrapping your head around what your future looks like, taking care of your mental health can be really difficult. Here are some ways to try and find some balance in your journey to manage your health.
Practice self-care – Contrary to popular belief, self-care is NOT a catch-all phrase that means to “treat yourself.” PsychCentral says, “Self-care is any activity that we do deliberately in order to take care of our mental, emotional, and physical health. Although it’s a simple concept in theory, it’s something we very often overlook. Good self-care is key to improved mood and reduced anxiety. It’s also key to a good relationship with oneself and others” (x).
Self-care can include, but is not limited to:
- Going for a walk
- Taking all of your medications
- Drinking as much water as your body needs
- Calling a friend
- Reading a book
- Going to therapy
- Standing up for yourself
- Cutting out people in your life who don’t care about you
Self-care for chronic illness patients will look a little different than it does for physically healthy people, so figure out what you need for your physical and mental needs.
Self-care tips that chronic illness patients need
Find people who understand chronic illness, like other patients – It can be so exhausting to try and talk to healthy people about chronic illness things. Sometimes, you have to explain practically every word or phrase you use.
For example, here’s a thing I’ve said when talking about my RA with plenty of people over the years: “I have seronegative rheumatoid arthritis. I’m on Rituxan because I don’t respond to any TNF-inhibitors, including the TNF-alpha inhibitors, no matter how many DMARDs I’m on. And when I started Rituxan, I don’t think there were any JAK-inhibitors approved for RA. Rituxan is a b-cell inhibitor, and since my quality of life with methotrexate side effects is worse than the RA without methotrexate, I take Rituxan with a bunch of other DMARDs, as well as NSAIDs twice a day. I also take corticosteroids, although I’m trying to decrease those. I take methylprednisolone over prednisone.”
How many of you (who aren’t RA patients) know what I’m talking about there? (Yes, yes, I obviously threw in a bunch more phrases than I probably would have otherwise!) Count how many of these words or phrases you know:
- Seronegative
- Rituxan
- TNF inhibitor
- TNF alpha inhibitor
- Dmard
- JAK inhibitor
- B-cell inhibitor
- Methotrexate
- NSAID
- Corticosteroid
- Methylprednisolone
- Prednisone
Sometimes I want to talk about how I feel about my health without having to explain what I’m talking about after every sentence! Having to basically translate what we’re saying wears on the soul after a while. That’s one of the reasons why it can be so good for your mental health to connect with other chronic illness patients.
Talking to someone who just gets what you’re dealing with, even if they don’t have your exact illness, can be so beneficial. They understand how hard some of these things are to deal with, and from personal experience. You don’t have to one down your feelings because you’re worried about hurting them if they realize exactly how you feel.
It’s freeing.
So Someone Healthy Has Given You Unsolicitied Health Advice
Write down your symptoms, questions, or concerns about your physical health – How many times have you been in an appointment that you had specific plans for, then the doctor says something that completely throws you, and you leave after forgetting 75% of what you wanted to talk about? Or how many times have you been filling out the pre-appointment info sheet where you list symptoms and your medications and you realize later you forgot a bunch of relevant information?
Maybe it’s because there was a lot you wanted to share and you just forgot most of it, or because the doctor says something that completely surprises and/or upsets you, or because you’re one of the many chronic illness patients who experience brain fog. Whatever causes it, it’s easy to forget things you meant to talk about. And then you get stressed about remembering things and it’s a cycle.
That’s why I strongly suggest writing down: the symptoms you have or want to draw attention to, any questions you or your loved one(s) might have, any concerns you have, and your daily medications. Whether it be on paper or on your phone, you want it to be in a place that will help you remember for your appointments. Knowing that this is all in a place that you won’t forget can then help you be less stressed about it all.
What Is Self-Advocacy? An Answer + Strategies To Help
Discover what tools or tips help you manage your symptoms – Every chronically ill person has a bunch of things to juggle. In addition to all the things that everyone deals with (bills, making meals, etc.), we have our symptoms, medical appointments, medical bills, and, of course, mental health.
So in order to stay on top of all of this, and to make things as easy as possible, you should try to figure out what tools or tips help you manage your symptoms.
Before I talk about what strategies I use, I want to remind you that what works for me won’t necessarily work for you. Even if we have all of the same illnesses!
That being said, here are some things that help me.
I use alarms to remind me to take my medications, as I have to take medications 4 times a day. I don’t use an alarm with sound, but just having that reminder pop up is super helpful.
Similarly, in my planner, I have a note to take all of my medications every day. I use habit tracker stickers in my planner, and “Take All Meds” is always one of them. This gives me another level of accountability.
I also have what I call my medical info sheet. I include a short version of my medical history, all of my allergies, all of the medications I take, my family medical history, and a list of my doctors, including where they are (mostly because not all of them are at MGH). You can get a version of it here.
Mental Health And COVID-19: How I’ve Been Managing Mine
Allow yourself to be upset – This is one of the biggest pieces of advice I can give! Don’t try and hold it all in.
If you keep it all bottled in, then when you do feel everything, it will be like an explosion.
There are a couple of different ways to deal with these feelings. One is journaling.
The University of Rochester Medical Center says, “if you struggle with stress, depression, or anxiety, keeping a journal can be a great idea. It can help you gain control of your emotions and improve your mental health” (x).
They give a lot of tips for how to journal, as well as how it can benefit you. They really emphasize that “Keeping a journal helps you create order when your world feels like it’s in chaos. You get to know yourself by revealing your most private fears, thoughts, and feelings. Look at your writing time as personal relaxation time” (x).
If you have been ill or in pain for a very long time, then you might already have the tools to process your emotions without things like journaling.
Personally, I power through when I have to and when I’m able to, I let myself be upset. So that might mean that I hold it together during work hours and feel my feelings that evening.
The biggest way that I do that is, honestly, power cry. I’ll cry for 10-15 minutes, and then pull myself together. I need that way to express myself instead of keeping it buried.
Image description: Gif of Jake Peralta from Brooklyn Nine-Nine saying “Alright. I’m gonna go cry”.
Try to keep an eye on your mental health – Like most illnesses, you won’t wake up one day and suddenly have a mental illness like depression or anxiety. This is why it’s important to develop habits to help your mental health before you have a mental illness.
Like I said earlier, people with chronic illness are at a higher risk of developing a mental illness. Depression specifically is a common one. In fact, “It’s estimated that up to one-third of individuals with a serious medical condition have symptoms of depression” (x).
However, the CDC says, “Scientists have yet to determine if having a chronic disease increases the prevalence of depression or depression increases the risk of obtaining a chronic disease” (x).
I don’t share this to scare you, and I really don’t want you to be freaked out by this. I’m sharing it with you because I want you to be aware and to keep an eye on your mental health.
Maybe try checking in with yourself monthly or weekly. Ask yourself: Am I coping OK? Am I enjoying activities that used to make me happy? Am I experiencing a variety of emotions on a regular basis?
Those are all examples of some of depression’s common symptoms. But given that depression is super prevalent in chronic disease patients, I want to share some more depression symptoms.
Symptoms of depression include:
- Insomnia or sleeping too much
- Losing interest in things that you used to enjoy
- Overeating or appetite loss
- Feeling “empty”
I tried to include symptoms that are not common illness symptoms because there are a lot of other symptoms of depression that are also common symptoms of chronic diseases. Such as brain fog and fatigue.
I hope that this post has helped you in some way. Dealing with mental health and chronic physical illnesses can be really difficult, but I think that being aware of what could happen is really important.
How do you manage your mental health when you have a chronic physical illness?
Like this post? Share it ! Then check out:
What’s In My Tool Box for Dealing with Chronic Pain, The Connection Between Dysautonomia and Anxiety, Living with a Suppressed Immune System in a Pandemic, We Need To Talk about the “Disease Warrior” Model
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
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