Relationship Self-Advocacy When Living With Chronic illness
Do you feel seen, heard and supported with your chronic illness from the people who are close to you?
Self-advocating in personal relationships when you are living with chronic illness can be tough because people in your life may not be able to fully understand what you are going through, what you need, or how to help you. They can’t feel what you are feeling, just like you can’t feel what they are feeling.
That can be a lonely thought.
While you would not wish a firsthand understanding of chronic illness on your worst enemy, it is isolating to realize that most people have no way to truly empathize with you despite their willingness to try. However, realizing this can be important to navigating relationships when you are living with a chronic illness.
It can also help you tailor how to advocate for yourself in your close relationships.
Chronic illness can cause relationship stress, a change in social circles, and it may even end some relationships. This has happened in my life to some extent every time I have been diagnosed with lymphoma, and interestingly, when I started to truly begin to find my Chronic Wellness Balance. Because your diagnosis may greatly change your situation, that can impact how you show up in a relationship and how that other person shows up for you. It can strengthen or crush a relationship - and, about everything in between.
Relationships can be complicated. And, when you add a chronic illness to the mix, it is just one more facet of that relationship that will need to be navigated. The added stress can show both the cracks and strengths in the relationship.
Many of us with chronic illness know the drill. However, it doesn’t necessarily stop it from hurting, especially when the people who don’t show up for you are close to you. While I am not a therapist, I have been to this rodeo myself and with some of my clients. I am sharing some of my practical tips that I hope can help you self-advocate in your close relationships.
Tips For Getting What You Need From Your Close Relationships
Be Honest & Ask For What You Need
The most important way to get what you need from your relationships is to be honest with your loved ones about what is going on with you and what kind of support you need. Of course, people who are close to you are aware that you have a chronic illness. But, that does not mean that they can extrapolate exactly what that might mean for you and how it relates to your relationship with them.
By doing your best to explain what is going on, you give the people that are close to you a fair chance to know what is going on with you and how they can support you - if they are interested and capable. If they are not interested or capable of showing up for you in a meaningful way, that is helpful information for you to consider going forward. This will hurt, and may impact how much you choose to rely on this person going forward.
share the science
Make sure that the people who are important in your life have some resources to understand your illness and the challenges it may present in your everyday life from an outside source. Whether this is accomplished by looking at online resources or by going to certain healthcare provider appointments, having a baseline knowledge of why you might not be showing up in the same way as you used to may give the people in your life some more understanding of, and empathy for, what you are going through.
use “safe words”
It can be helpful to come up with a short-hand for telling someone how you feel and what you might need. This way you don’t need to explain yourself in the moment, but can get the point across. It can also help to keep things less emotional if you are having a rough moment. I refer to this as a “safe word” with some of my clients. It’s a little inappropriate to use this term, but chronic illness calls for some amount of inappropriate humor.
I like to encourage the safe word to have some personal meaning and to be positive or funny. It can take some of the seriousness and exasperation out of the mix when you need to use it. When needing to find a safe word with kids, I recommend considering something super silly and/or something that relates to a meaningful experience, a favorite book or movie, or an inside joke.
My other tip related to the safe word is that the conversation around the word and what you need when you use it, is best had when all involved are feeling open to discussing.
Create Systems to Keep the Household On Task
One of the hardest parts of chronic illness can be making sure that certain household tasks happen. Finding a way to collaborate on tasks and to-dos within your household will take some of the guesswork out of it for all involved if you need to step back due to your symptoms.
I recommend some version of sharing calendars and sharing lists via apps like iPhone Notes, a shared document, or spreadsheet. This can be particularly helpful if you experience brain fog. By decluttering your brain and getting the list and deadlines into a shared document, you end up streamlining your process for communicating household to-dos with those who are helping you. This can also be helpful because you will avoid the need to rethink your list at a later time. You can add, subtract, reprioritize and assign tasks as needed.
Please note that if you experience challenges with creating spreadsheets or documents, you can delegate that task to your loved one and/or use tech like Google Home or Alexa that can do it for you by adding to your calendar or to a document. The other alternative is to use whatever already works for you to keep track of daily life and find a way to share it with the appropriate people in your life.
Express Gratitude
Chronic illness can be difficult for all involved. Acknowledging whatever your loved ones are able to do for you is helpful to show your gratitude. They deserve some recognition for showing up for you. Sometimes the small gestures really go a long way. Chronic illness, especially if it is life-threatening, can really make relationships all about the seriousness of what is going on. Making small gestures like a well-timed thank you, a quick text or a funny meme, can help to add some levity to the seriousness of what may be going on with your chronic illness.
Find the Joy in Your Relationship
When it is possible, try to find some time to have fun with your loved ones so that your relationships do not become purely about chronic illness. By adding some joy to your relationships, it helps to balance the seriousness of what is going on with your health. It can also provide a reminder of why you make such a great team. Even when you are feeling bad, you can share a meal, watch a show or sit together. And, you can make plans for something to look forward to in the near future (like a night out or a weekend getaway).
Find the Humor in the Messiness of It All
Chronic illness can add a whole other layer of stress and misunderstanding to a relationship. Being proactive in communicating how you are feeling and what your needs are can be a way to keep your chronic illness from getting in the way of maintaining your close relationships. What I have seen work well for myself and for my clients is finding a way to temper the reality of the situation with some humor or lightheartedness. Sometimes, we just need to realize that life is messy, we are all messy, relationships are messy and chronic illness is messy.
Find Additional Support
While finding support from people in your personal life can be important, you may want some support beyond your current friends and family. Well-meaning people in your life may not always truly know what you are going through. And, sometimes it can be helpful to receive support from people in similar situations. This can look like participating in a support group, joining an online community, or reaching out for expert support via a health coach or therapist, as appropriate.
Feel the feelings
If you are having difficulty navigating your close relationship while living with chronic illness, it can be helpful to talk to a therapist. There are a lot of valid feelings that come up that may need a constructive outlet. It might take some time to work through how you feel about the changes in your life and your relationships. The same may be true for those people that are close to you.
Want More Self-Advocacy Tips?
For more information on being your own best advocate when living with chronic illness, check out my other related blog posts.
My hope is that you will be seen, heard and supported in your relationships.
This starts by being honest about what you are going through, and being proactive about getting the support you need. Studies show that having strong social support can actually improve your immune system and help you to heal. So, this is important!
How has your chronic illness impacted your close relationships?
What can you do to Get what you need in your close relationships going forward?
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