How to Help Loved Ones Understand Your Chronic Illness
It is often talked about how people can support a friend who is living with a chronic illness. However, people in our lives who are on the outside may need support in helping to understand our health conditions and the best way they can show up for us.
Relationships of all kinds, when one-sided, don’t pave the way for open communication, understanding or empathy. If the focus is only on what people can do for us, we neglect a major part of our lives that can be crucial to our overall well being,
Social interaction with healthy boundaries set it place can help us feel less alone, uplift our spirits during hard times and celebrate our wins. Our loved ones though can also feel just as helpless and alone when they know there is nothing they can do to help us heal.
Loved ones can get frustrated, impatient and not understand why the person they once knew can’t do certain activities as they used to, needing to adjust to the lifestyle changes just as much as the person living with the condition.
There needs to be a balance of equal give and take, when it comes to making an effort to help both parties understand each other. Sometimes people in our lives may not be able to empathize if they haven’t been living with a chronic illness, but helping them understand is the first step in the right direction.
Below are a few thoughts on how to be a good friend to someone who is trying to understand your chronic illness.
5 Tips to Help People in Your Life Understand What You Are Going Through:
1. Let people know what your boundaries are
Creating healthy boundaries is an important part of any relationship, especially when you have a chronic illness. Balancing trying to live and be well with all the other demands life can throw your way can be overwhelming. Taking stock of what is important and what can be left to the side can help when creating boundaries with people as you forge on your path to wellness.
For instance, if you find going out and partying is not important for you to do every weekend, allocate a time of your week or month where you will allow yourself permission to have fun. Don’t feel guilty for saying no though and need to go to bed early and set up a routine. Making yourself a priority first, will allow you to show up for others by conserving your energy and not spreading yourself too thin trying to please everyone.
2. Share information that can lead the way to open communication
Too much medical jargon can even be confusing for a person living with a chronic illness to understand. So imagine trying to have someone in your life who is clueless trying to get it this way. We need to share resources that can touch them such as blog posts and personal stories of those in your community, relatable movies, books, influencers in society who live with your condition or various metaphorical explanations such as the “Spoon Theory” mentioned above.
3. Bring them along to doctor appointments
This can give people in your life a first-hand look at what it’s truly like to be in your shoes. They can even have the opportunity to ask your medical team any questions for further clarification and even be your note taker for when the doctor is giving specific instructions in your medical plan.
4. Share what a typical day can look like
Not only the good days should be shared but the bad and the ugly ones too. Write a blog post, vlog about your day or message your loved ones asking how their day was and share yours. Living with a chronic illness can be unpredictable so showing all the aspects of what it can look like gives the chance for someone to feel closer to you.
5. Show and tell them what is difficult or not so difficult for you to do
The biggest misunderstandings arise when people in your life simply don’t understand why you can’t do something you once could do as often. For instance, if a friend knew you would always be up for going to a party every weekend but now you need to scale back may feel as if you don’t want to hang out, constantly bailing or worse, making it up or exaggerating.
Other scenarios can include not being able to eat the same foods anymore due to allergies or intolerances that bother your condition and opening a bottle of water. Telling someone is often not enough, you may need to show them too. If your hand is hurting due to arthritis making it hard to open a bottle of water, showing them that it’s from joint damage as seen in an X-ray can give people a visual to better understand why something is difficult. Letting people know what you can still do easily will allow them to gain a bigger perspective on your situation.
Don’t be afraid to open up to those in your circle because they often need guidance in knowing how they can help you. The only person who can do that is you. If you find yourself doing all of the above but people still don’t seem to understand or disrespect your boundaries, the only thing you can do is continue to focus on yourself by taking a step back. Know you have done your best and sometimes people do come around. Either way, it’s not worth stressing over and impacting your health.
Effie Koliopoulos is a writer, blogger, advocate, and activist. She lives in Chicago, IL, and is currently working on her debut children’s book. Follow along on her blog at, Rising Above rheumatoid arthritis.