Why Mental Health Is Important When Living with a Chronic Illness

PUBLISHED Nov 17th, 2020 & UPDATED ON Feb 6th, 2023

Living with a chronic illness can be hard.

That’s the understatement of the century. Sorry, let’s try that again. Ahem… Having a chronic illness can REALLY suck! Holy shit, does it suck! Obviously, some days are better than others, but the bad days can be really, reeeaaally bad.

People who live with chronic illness or disease often struggle with their mental health because of their physical symptoms. Talk about a double gut punch!

So, let’s talk about what it means to have a chronic illness and dive thru why it’s so so so so important to have mental health resources available to you (like how to choose a therapist) when you have chronic conditions.

But first…

What Are Chronic Illnesses?

If you aren’t part of the chronic illness community, you might not be totally sure what a chronic illness even is. That’s ok! Simply put, a chronic illness is an illness or disease that lasts more than 1 year and requires medical assistance in order to manage it.

This includes diabetes, some cancers, multiple sclerosis, endometriosis, epilepsy, and mental conditions like depression and anxiety. Unfortunately, many chronic conditions are genetic and aren’t caused by anything a person has done or by the environment that they’re living in.

Basically, it’s when a person is sick for a really long time and doesn’t have the promise of a cure to help them get better. It just fucking suuuucks.

Why Mental Health Is REALLY Important

The reality is that living with a chronic illness is extra hard on someone’s mental health. It’s draining, it’s exhausting, it’s infuriating, and you bet your ass it’s anxiety-inducing. And after all of that emotional toil, it’s even less encouraging to spend more time and energy seeking out mental health resources. But here’s why it’s important to do it!

1. The Chronic Illness Will Always Be There

People in the chronic illness community (also known as “Spoonies”) are twice as likely to develop depression and anxiety compared to physically healthy and able-bodied people. Some people with chronic conditions can even develop PTSD from their illness or medical trauma that they’ve endured.

It can be emotionally painful to have to live through a disease that you know can’t be cured. We often need someone to listen to us lament and complain about our situations. It can feel really cathartic to talk about our experiences without any judgement or shame. But soooo many people try and offer advice from the goodness of their heart on how to cure chronic illness; however, it’s never as helpful as they think it is. Spoonies hear phrases like these ALL. THE. TIME:

“Have you tried juicing?”

“Yoga cured my *insert medical problem here. *”

“Think positively and manifest your health.”

“I hope you get better soon!”

YES, we’ve tried all the remedies. We’ve tried every suggestion ever given to us. But the reality is that we won’t get better soon, or… ever. Comments like these can make us feel invalidated and remind us that we are sick. For like… ever. It’s hard accepting that there is no quick fix or magical concoction that will cure us. We need to grieve and mourn the loss of the life that we knew because it’s hard to accept that we’re going to be riding the struggle bus for the rest of our lives! That’s why it’s so important to have professional help and guidance.

2. The Physical Pain Might Never Go Away

It can be physically taxing to always be in pain. Our bodies need rest and a lot of care when we are in pain. Pain, especially chronic pain related to chronic conditions, impacts a person’s mental health significantly! Chronic pain can cause you to lose sleep, miss events, miss seeing your friends, feel fatigued, and develop anxiety or depression. It’s hard on your body and your mind because you never know how you’re going to feel when you wake up.

Accepting the pain that your body creates can be difficult to come to terms with. That’s why it’s important to have a mental health professional for you to talk to. They might not be able to fix your pain, but they can certainly help you work through it.

3. Your Medical Treatment May Add Extra Stress

Keeping up with medical treatment can be physically and mentally draining because there is always so much to take into consideration. Did you take your medication today? Are your supplies prepped? How are you getting to and from physiotherapy if you’re in this much pain? It’s a lot to think about!

Some people with chronic illnesses are taxed with what feels like a full-time job when it comes to taking care of themselves and receiving treatment. It doesn’t leave a lot of room to make sure that you’re looking after your mental health as well. Life can start to feel like a never-ending doctor’s appointment and that can be hard to process.

A person with chronic illness can have a lot of medical problems that they need to be constantly thinking about. You’re always having to prepare for the worst-case scenario and that can be scary and overwhelming.

Having a good mental foundation can help people with chronic illnesses cope with the constant care that their body requires. It’s hard to do it all on our own!

4. Job Security Is Always a Concern

Spoonies often face financial troubles. This is because of our inability to find work that is willing to accommodate our bodies and our physical limitations. Sometimes, a person can be so unwell that they aren’t able to work at all. This situation is so stressful! Especially if someone is wondering how they’re going to be able to pay for their treatment AND keep a roof over their head. What is this called? Repeat after me. This is called ableism.

5. FOMO Is So Real

FOMO is real. Oh, man is it real! Spoonies wake up with a finite amount of energy that they’re able to expend in a day. We may have RSVP’d to an event or a dinner with a friend but woke up the day of only to realize that even taking a shower will put us on bed rest for a few days.

You know how everyone was complaining about being stuck inside at the beginning of quarantine? Well, us Spoonies were already experts on self-isolation! We have to make the hard decisions between our health and our social life. We often feel like we’re missing out on the world around us.

Mental health and wellness are SO. IM. PORT. ANT. for spoonies and people with chronic illnesses. It can help someone’s perspective shift in a really healthy direction or guide them through some of the most painful (literally and metaphorically) times in their life. Having a chronic illness is never easy, but using mental health resources to help us work through some really tough shit can change how we navigate our toughest times.

5 Ways to Care for Your Mental Health

To reiterate: people with chronic illnesses have a higher likelihood of developing depression than their not-chronically ill counterparts. And if you have a chronic illness and you’re reading this article, we are soooo sorry friend. Our writer that’s writing up this article has about 7 chronic conditions herself so she understands your battle!

We know that not everyone’s experience with their diagnosis is the same. Maybe you’re thrilled that you know what’s going on in your body, or you might be devastated. Either way, we want to make sure that you are as mentally healthy as you can be. Here are some tips on how to care for your mental health when you have a chronic illness:

1. Take Time to Process Your Diagnosis

This shit is hard. You might be mourning the loss of the body and the life that you once knew. That’s totally ok and totally normal! You need to grieve in a way that lets you feel all the emotions you need to feel about it. CRY IT OUT! We’ll do it with you! Ready? *tears*

2. Think About Your Self Care

We know that it can be hard to practice self care when you have a chronic illness. You might have terrible fatigue and pain and might not be able to move. Too many spoonies are lost on basic tasks some days so the thought of doing MORE for some self care is daunting.

We’re gonna ask you to think about your definition of self care and find what it means for YOU. This could just be you listening to your body and resting. This could mean taking your meds or eating a bit of food to keep you going. It’s all about accomplishing the small things and celebrating those wins!

3. Don’t Overdo It on Your Good Days

When you feel good, you want to take advantage of your good days! Our writer Olivia finds any moment that she feels “fine” and does everything that she can’t do on her bad days. This is a lesson that she even needs to learn – don’t overdo it! Soooo many of us Spoonies use up too many spoons one day and then end up in a deficit the next. Try and pace yourself, even on your good days!

4. Join a Community

Sometimes, you just want to complain without the people in your life telling you to try celery juice as a cure for your illness. Spoonies aren’t always looking for answers or cures, we might just want to feel validated in our experience. This is where joining a group of fellow sick people comes in handy! There are fantastic ways to connect with other spoonies! Lookup a Facebook group for people with your condition and see if you vibe with it. There is also a website/community called The Mighty where you can connect with others on specific message boards that focus on the topics you wanna talk about.

5. Talk to a Mental Health Professional

There can be a lot of shit to unpack when you have a chronic illness. Sometimes, talking to your friends and family can only get you so far. Talking to a mental health professional can help you sort out your emotions and process what’s going on within your body. It’s hard! There are going to be good days and bad days when it comes to both your mental and physical health. You might need a hand sorting everything out and that’s ok! So many of us do!

Chronic illnesses aren’t simple. There isn’t a roadmap that helps us navigate our thoughts, feelings, and experiences. It’s a confusing ball of bullshit that so many of us have to work through on a daily basis.

If you’re a Spoonie and trying to figure out how to go about your life, you aren’t alone. If you’re someone supporting a Spoonie and you’re reading this article, support them and love them as much as you can in whatever way they need you to. Be patient with them because they’re trying their best to just exist.

To all our Spoonies, we believe in you! You’re doing great, sweetie!