4 Steps to Having Open Conversations With Loved Ones About Your Chronic Illness

Living with a chronic illness means adapting all areas of your life to fit around it. It might mean changing the way you work or how much time you spend with loved ones. This can cause conflict with the people in our lives, as they don’t fully comprehend the impact of our illness. To help with this, we might decide to have an open conversation with our family and friends, to help them understand why we are putting certain things in place or what our lives may look like in the future now that we have a chronic illness to manage.

If you’ve been in this position before, you will know the issues that can arise when having these conversations, particularly with the closest people in our lives. These conversations may become heated and emotional as many delicate points can be brought up and discussed in a new way. Over the years, I have had many of these conversations and most of them did not go smoothly. After having a lot of these strained discussions, I decided I needed a plan to help me get through them and ensure the conversation was beneficial for both myself and the people I was speaking with. And so, I created my step-by-step guide to having an honest conversation with family and friends about my chronic illness.

Step 1: Decide exactly what aspect of your chronic illness you want to talk about.

A lot of the times I started a conversation about my illness with my family and friends, I would find myself easily getting distracted and drifting into other subjects. It would only be after the conversation was over that I would realize I didn’t talk about the one thing I needed to. Now when I know I need to have a conversation with someone about something in particular, I bring it up at the beginning, telling them I want to talk to them about this specific thing. This helps us both to stay on topic and allows me to speak about the things I want to.

Step 2: Plan an appropriate time and place to have the conversation.

Looking back on some of the discussions I have had that quickly turned into arguments, I can identify times when I brought up a subject in the wrong place. I’ve found that conversations I know are going to be very emotional or difficult should be had in a private place where all people involved feel comfortable. You can’t expect someone to react to something calmly if they are already in an environment they feel uneasy in. For conversations I want to feel lighter and less intense, I find going for a walk together can make it easier to talk about things. This is because you’re not facing each other and you’re partially focused on another activity. Some of the deepest conversations I’ve ever had have occurred on a walk or in the car.

Step 3: Acknowledge that some things may be difficult for the other person to hear.

When we live with a chronic illness, we can spend so much time focusing on how we are affected by it, we can forget our loved ones have been affected by it too. When I first started my blog and showed the posts to my family, I was surprised by their reactions. I remember my parents telling me that they found it difficult to read about the ways this illness has changed my life and the range of symptoms I have to deal with on a regular basis. To me, this information wasn’t emotional at all because it was something I was used to but to them, it was a stark reminder of the difficulties their daughter has to face. I try to remind myself people react in different ways to the same scenario depending on the context behind it. This helps me be more accepting of reactions towards what I am saying and being open to their point of view.

Step 4: Know when to let it go.

Sometimes you can try all you can to make someone comprehend what you’re going through and they just don’t get it. This might be because it is too hard for them to understand or they don’t want to understand. In either case, it’s important to know when to let the subject go and to accept that their opinion might not match your own. This step has saved me a lot of energy and for someone living with CFS/ME, that is very important to me.

By using these simple guides, I have been able to have much more productive and honest conversations with the people in my life and consequently, have greatly improved my relationships with them. After 10 years living with chronic illness, I know the relationships we have are incredibly important, and meaningful conversations are the best way to nourish them.