6 Things to Consider when Adjusting to Life with a Chronic Illness
Life has its way of changing things when you least expect them, especially when it comes to your health. Let’s talk about some of the things to expect when adjusting to life with a chronic illness.
#1. Feeling the Pressure to “Do it All”
Chances are that you have many things on your plate (i.e., work, school, family, etc.). Add a chronic illness or pain to that list and things are bound to get tricky.
If you’re like millions of others with chronic illnesses, you feel pressure to do everything and be “productive” because that’s what society expects. People encourage you to keep a to-do list and measure your success on how much you accomplish during the day.
How is that working for you right now?
The pressure to be “productive” and “successful” with a chronic illness can bring on a lot of stress because your body does not always follow society’s rules. It has its own needs and many times the goals you set for yourself aren’t reached when they are unrealistic or unhelpful for you.
And what is “productive” and “successful”, anyway?
You will define this yourself. It all depends on what is best for you in the moment – not what other people think is the standard.
You really don’t have to “do it all,” be “perfect” or “productive” based on someone else’s standards (especially when they don’t work for you). Define what productive looks like for you and let that guide how you approach your day.
Here are some chronic illness resources that can support you in adjusting to life with a chronic illness.
#2. Not Everyone will Understand or Support You with Your Chronic Illness
As mentioned before, life with a chronic illness looks different for you than other people who do not have a health diagnosis. Unfortunately, because they have a different way of approaching their life, they are not as likely to understand your experience.
Now don’t get me wrong… A different experience doesn’t exclude them from understanding, but it usually takes you explaining your situation to paint a clear picture for them first. Some people will have sympathy for you and want to support you as much as possible. Others may have a different response.
As a chronic illness therapist, I talk with people every day who express feeling sad and angry because important people in their lives don’t understand or support them when it comes to their health. In fact, many of them are family members, employers and even health professionals.
Some of the ways that you can feel misunderstood is when labeled as “lazy,” “sensitive,” “making excuses” or even “wanting attention” when talking about your chronic illness. It’s not a good feeling when your loved ones don’t help or make you feel worse for speaking your truth.
Have you ever experienced this? If so, you are not alone.
Those experiences alone can make you feel helpless when adjusting to life with a chronic illness.
Surround yourself with people that get it.
Many chronically ill people have experienced the hurt and feelings of isolation that come with lack of support, but there are still people out there who get it. You just have to figure out who they are and cherish those relationships closely.
These are the people that will add value, meaning and joy in your life.
Participating in support groups for people living with a chronic illness is an immediate way to connect with other people that understand. There are different types of groups (i.e., educational, therapy, and skills-based). An online search and a referral from your doctor could guide you in finding the best fit for you.
I offer virtual Chronic Illness Support Groups for teens and adults that focus on building community, effective communication and skill-building to help you adjust to life with a chronic illness. Click the link to learn more and enroll today.
#3. Showing Yourself Compassion Goes a Long Way
One of my favorite chronic illness authors, Toni Bernhard, encourages chronically ill people to show self-compassion when your body doesn’t respond how you want it to. In her book, she describes compassion as “reaching out to help alleviate the suffering of ourselves and others.” It’s easier to show compassion to others than yourself, so we will focus on self-compassion.
Here are two ways to show yourself compassion:
#1. Take more time to listen to your body.
This is usually the complete opposite of what you likely want to do when living inside of a chronically ill body because “who actually wants to notice the uncomfortable things their body is doing?” I know it sounds confusing, but let’s talk about that a little more.
Your body is communicating messages to you with all of its symptoms (in one way or another), and it is important for you to know what those messages are so that you are best able to take care of yourself (self-compassion). So many times I hear people say that they know their body needs rest (by recognizing the symptoms), but they push themselves anyway and ignore the signs.
What message does that send to your body? What message are you telling yourself when that happens?
I know how hard it is to pull back and do things differently, especially when that means you are saying “no” to things that bring you joy and fulfillment. But consider what will happen when you don’t listen to your body?
Listening to your body allows you to make adjustments necessary to function at your best (whatever your “best” is at the time). The goal is for you and your body to work together as you adjust to life with a chronic illness. You’re more able to do that when you notice the signs and adjust.
#2. Give yourself permission to do what’s best for you.
This is the hard part about showing compassion. Once you have the mindset adjustment, now you have to put it into action (even when you don’t want to). That’s scary and frustrating sometimes.
To show compassion means that you are sometimes canceling plans, working less hours and spending time doing other things than you’d prefer. It doesn’t even have to be a major adjustment, but you still feel the change.
For example, maybe you used to be more physically active, but now that you experience chronic pain when walking for longer periods of time, you allow yourself to use a mobility aid when necessary at the grocery store.
Trust me, using a mobility aid is a major decision and can initially make you feel embarrassed, sad and angry that your body “can’t keep up” like it used to.
Here’s the difference here – you are more likely to do things you want in life when you allow yourself to do what’s best for you (in this case, use the mobility aid). I can’t tell you how much excitement and joy my clients have experienced when they allowed themself to use the supports instead of trying to push themselves unnecessarily.
They were able to spend more time in the store without feeling the need to recover as much afterwards, because they didn’t burn so much energy doing it.
The lesson here is that although showing self-compassion can initially feel like failure or punishment, it actually enhances your life and gives you the opportunity to enjoy it more.
It’s actually a form of success. Just a mindset adjustment there.
What are some ways you can show self-compassion today?
#4. Each Day will Not Look the Same
A common assumption that is made with chronic illnesses is that every day will be hard or look the same. But actually that’s not true.
Many chronically ill people’s experiences show that each day can look different. You may even notice that how you feel comes and goes in waves or “seasons.” Because of that, it is important to approach each day one at a time without assuming how it will turn out.
Have you ever woke up feeling great, but questioned if you should do anything for fear that your symptoms will return? Or maybe you woke up in pain despite feeling less symptoms the day before? Then there are the moments when you forget what it’s like to feel “better” because it’s been so long.
The ups and downs are different for every person, and each experience can be exhausting and overwhelming. Here are some strategies to support your mood during a chronic illness flare up.
It can also be helpful to develop a Plan A and Plan B Day to have more “good days” with a chronic illness. Read my blog post to learn more on how to adjust to life with a chronic illness when you feel differently from the day before (or earlier in the day).
#5. Some Important Parts of Your Life Can Change
I’m sure you have often wondered how your life will turn out since being diagnosed with your chronic illness. Perhaps you’ve wondered if you’ll be able to make the necessary adjustments and live a meaningful life.
You’re not alone.
Some of the adjustments you may need to make with your chronic illness may require that you stop doing things that you love – not because it’s your fault, but because it is too difficult or unattainable to do them in your current season.
Here are some common chronic illness adjustments:
- Travel restrictions
- Changes to your diet
- Limitations with outdoor activities (due to weather conditions or physical abilities)
- Spending more time resting
- Less time participating in preferred activities (i.e., sports, gardening, household chores, long showers, attending events with friends/family)
- Changing your work hours
- Leaving a job you love
- Taking leave from school (or taking more time to complete courses)
- Asking for help with things that used to be easy
These are just a few major life adjustments that chronically ill people have expressed making. Sometimes these adjustments are temporary, but other times they are permanent. That can make you feel like you’ve experienced a loss, and it’s not uncommon to feel a wave of emotions.
Learn more about how to manage your mental health while making these adjustments with your chronic illness.
#6. You Can Still Live a Meaningful Life with a Chronic Illness
You can still find hope and meaning in your life even when things don’t go as you planned. Now it’s about finding ways to make life work for you.
This is the time to explore other parts of yourself with curiosity, learning more things that are enjoyable to you that you didn’t know about before your chronic illness. Although it’s hard to not focus on limitations, you can also find joy in taking the time to explore what is possible.
There is more in life that can bring you joy and fulfillment (i.e., time with family, new hobbies, different career, connection with nature, etc.). Suzan L. Jackson explains more in her book about different ways to approach your life with exploration, finding meaning with your “new norm” with a chronic illness. I encourage you to read this to start this part of your journey.
What are some things that currently bring you joy? Are there any other things you would like to try?
Next Steps for Adjusting to Life with a Chronic Illness
I help individuals, families and groups who are living with chronic illnesses and chronic pain and the emotional toll that it can bring. Therapy is a powerful tool that can help you find meaning in your life after making all of the necessary changes for your health. Although the journey with a chronic illness is hard, therapy can make it more bearable by providing tools to support yourself as you are adjusting to life with a chronic illness.
You can schedule your first appointment with me by booking a free 15-minute consultation.
