How To Talk About Your Chronic Illness If You’ve Recently Been Diagnosed

There are many hot topics that come to mind after being diagnosed with a health condition, but one of the biggest challenges is learning how to talk about your chronic illness with others. Before talking about what can help, let’s talk about things that can get in the way of making this big decision.

Challenges with Talking About Your Chronic Illness

As a chronic illness therapist, many people ask me, “Why would I want to talk about my chronic illness with anyone?” Then the first thing they talk about is what gets in the way of talking about their health. That’s an understandable concern because your health condition is a personal matter.

So before we go any further in talking about the good things that can happen when you talk about it, I think it’s best we consider the hard stuff, too.

1.   It’s Hard to Talk About

There it is… I said it. Talking about your chronic illness can be hard sometimes because there is so much to consider. Honestly, you’re still grieving the news for yourself, and it takes time to figure out how to make sense of it all.

If you’re struggling to come to terms with what is going on, it can be incredibly hard to talk about it with someone else. However, it gets easier the more you have the hard conversations.

2.   Fear that Others Won’t Understand

It is overwhelming when talking with someone about your health only to learn that they still don’t “get it.” As a matter of fact, those moments can make you feel angry. Beneath that anger are other valid emotions to consider (i.e., rejection, disappointed, lonely, scared, sad). No one wants to feel that way, so many people avoid these conversations so that you don’t have to experience them at all.

3. Feeling that Your Health is a Burden for People

Have you ever had moments when you feel that you are an inconvenience for others? In the case of your chronic illness, this is a common worry. Usually worst case scenarios play out in your mind when considering talking about your chronic illness (i.e., “they’ll be annoyed with me,” “it’ll just make things awkward,” or “I’ll ruin their life when they find out”).

Take a moment to evaluate if this is actually true and if you can handle the outcome (for better or worse). After considering the facts you may notice that you aren’t actually a burden for most people and they actually care about you.

If people confirm that they feel you are a burden, it’s first important to remind yourself that you did nothing wrong by sharing. Also, this is an opportunity to give that other person space, because their response is not supportive of you.

4.  Lack of Knowledge of What You Need

How can you possibly talk with others about what you need when you don’t even know? Great question! Not having the answers about your health and needs can make you feel unsafe, and there may be many times during your journey where you will definitely not have all of the answers.

One of the most important things you will need is someone to listen and understand. Everything else will come after that. Who knows? The person you’re talking to may offer support in ways you didn’t realize you needed.

5. Not Wanting Other People to Feel Bad

Now that you know the news, you’re considering how other people will handle it. Valid concern here. I often hear people say, “I don’t need people crying or getting upset when they find out, because then I’ll have to worry about making them feel better.”

You might be struggling with handling your own feelings, so witnessing someone else’s response can be complicated. It’s tough but important for everyone involved to feel what they need to feel.

You and your loved ones are expected to go through the grief process after a new medical diagnosis. Remember that everyone has their own process, but sometimes it can be more comforting to feel those things together rather than by yourself.

All of the challenges mentioned above are valid in their own ways. Here is an important question to consider here: If you allow fear to keep you from talking about your health, how will that help you in the long-run? Yes, it may feel safer in the moment, but long-term it can cause more harm and difficulty for you.

At some point the cycle of talking yourself out of situations for outcomes that may not even happen will no longer work for you. Our minds naturally focus on the negatives, but in this moment I encourage you to consider the good that can happen as well before making a decision.

Benefits of Talking About Your Chronic Illness

There are some great advantages to allowing yourself to be vulnerable and discuss your chronic illness – one of the most important things about you. Here are some ways it can help.

1. Others Can Learn How to Support You

Informing others about your health allows them to learn more about it and meet your needs (i.e., preparing meals with your dietary needs in mind at gatherings, loved ones helping with chores at home, offering to babysit and being a good listener).

They won’t know what you need until you tell them. When you keep the information to yourself, naturally more responsibility is on your plate, and that’s not really what you need right now.

I can’t tell you how often I became upset early on in my journey with chronic illness. I recall an instance of feeling angry because my friends invited me over and didn’t include food on the menu within my dietary restrictions. I asked myself questions like, “Don’t they know I’m ill?”

But after a while I realized that although they may have known I had Multiple Sclerosis, they didn’t necessarily know what that meant for my eating habits. It wasn’t their reality, and it was unrealistic for me to expect them to help me when they didn’t know how.

Moving forward I was able to communicate my dietary needs when invited to a friend or family member’s house. Most times they were able to accommodate my needs with no issue. I was also able to bring something I could eat so that it wasn’t awkward and I could still participate.

What a great feeling that was!

2. You Feel Better

Talking with others about your chronic illness can bring on a sense of relief for you and your loved ones. It is an amazing feeling when others around you know your needs and respond to you in a helpful way.

There’s less pressure to further explain yourself and you can take more time to focus on enjoying the people around you. It allows you to trust and confide in them more, which is important when living with a chronic illness.

3. You Feel More Connected with Others

You may be familiar with feeling like you’re on an island by yourself soon after diagnosis. I get it. Talking about your chronic illness allows you to build connections and community. Surrounding yourself with people that understand (chronically ill or not) can help you feel less lonely on your journey.

The chronic illness support groups that I facilitate are typically full of people with varying health conditions who want to feel connected with others. It’s so interesting that they have shared experiences even though they may not have the same conditions.

Even those that don’t always have exact similar experiences find value in talking about their health because other people learn more about their journey and respond with compassion. The discussions allow them to bond and even build friendships outside of the group.

Whether you participate in a group or talk with others in your immediate circle about your health, that communication builds connection. Remind yourself that you are not alone in what you’re going through (no matter how much you feel that you are), and there is someone out there who wants to listen and support you.

Give yourself that chance.

I host groups for chronically ill teens and adults. Visit my homepage to learn about the groups, dates, times and to enroll.

Become Informed About Your Chronic Illness

As I mentioned before, it is difficult to talk about your chronic illness when you don’t understand it yourself. Take some time to learn about your health first so that you can confidently inform others when the time is right. Here are some basic ways to get started:

1. Discuss your chronic health condition with your doctor once diagnosed. This allows you to ask questions and discuss your treatment options.
2. Research your condition during your personal time. Your physician should have reputable sources that you can read through (i.e., handouts, articles, websites). Request them if they are not offered to you.
3. Purchase books and other literature about your health condition. Having literature on-hand about your own chronic illness (especially ones that are easy to read) make it easy for you to refer back to them when needed. They use medical terms that you will become more familiar with when referring to your health, and they include information for both you and your family members/caregivers. Here’s an example of what to look for.
4. Join organizations or online support groups that support chronically ill people with your specific diagnosis. They tend to have many helpful resources and information at your fingertips that others may have had good experiences with.

The process of learning about your chronic illness is a lifetime journey and components of your health will be more understood over time. Be prepared to give yourself some “brain breaks” along the way, because spending long periods of time on research can increase your stress levels (and you don’t need any more help with that). If you notice you start to get to that place, set the research down for a bit and focus on something else.

But what happens if I don’t have much time to research before treatment starts?

Sometimes that is part of the process and the order may look different… That’s okay. There are still ways to get necessary information before beginning treatment.

Once I was diagnosed with Relapsing Remitting Multiple Sclerosis in 2019, my doctor recommended taking leave from work and beginning immediate three-day steroid infusion treatment the next day (eek!). So my initial information came directly from my doctor, who described the diagnosis, my symptoms and the immediate treatment recommendations. I asked as many questions as I could think of at the moment and considered the pros and cons of treatment to make an informed decision.

There may be moments when it is a health emergency and there is not much time to think things through. It is in those moments when confiding in a loved one is important so that you can fully focus on your health while they support you in other areas that you and your doctor discuss (i.e., childcare, pet care, work, etc).

Decide Who You Want to Inform

Your health is a personal, private matter and it makes sense that this next step will take some intentional thought. It is your legal right to inform whomever you feel is best to know about your chronic illness. Before doing so, ask yourself these questions:

1. Is this a medical emergency that requires someone else to know immediately? Emergencies typically mean the people who really NEED to know are the ones to inform because their involvement helps you focus on treatment and keep things functioning as smoothly as possible. For me, it was my husband, immediate family and my employer, because I literally had to drop work and household responsibilities to focus on my treatment.
2. Will you need ongoing support? It’s not uncommon to need some type of support after diagnosis. Support comes in different ways (i.e., childcare, making/delivering meals, mobility support, work/school accommodations, etc). Do not pressure yourself to have all of this information immediately.You will learn along the way what supports you need as situations arise.
3. Does your chronic illness and treatment require immediate or long-term lifestyle changes? If yes, some of these changes could impact others in your life (i.e., household family members, friends). Consider who would benefit to know so that they can be prepared to make necessary adjustments if needed.
4. What about complete strangers? A stranger is someone that you don’t have a personal relationship with that may ask questions about your health after making their own observations (i.e., “Are you okay?,” “You seem tired,” etc). The most important piece to consider is what you or the other person will gain from sharing. If you don’t see the benefits (noted above), then you may decide against it. Again, it’s completely your choice and right to share or withhold.

How Much Information Do You Want to Share?

Part of figuring out how much to share when talking about your chronic illness will depend on 1) how much you know about it and 2) how much information the other person needs to know to support you in the moment.

We know that sharing can be beneficial for everyone involved, but consider yourself first before sharing so you can determine how much you can share at the time. Are you feeling drained, experiencing brain fog or having other symptoms currently? Would that interfere with your ability to share in a clear way?

Knowing this about yourself in the moment can help you decide how thorough you can be when sharing (or whether you share at all).

Good news! You have options here (and we like those). Here are some simple solutions that can determine how much to information about your chronic illness to share with others:

Have a Full Discussion

These discussions typically take more time and energy. However, they can be helpful in discussing the diagnosis, what to expect and how that person can support you moving forward. This can be accomplished with a one-on-one conversation or even as a group (i.e., family meeting). Your loved ones have the opportunity to ask follow-up questions and process the news with you present (cue the emotional responses).

I know that part can sound scary, but let me offer some encouraging words here. Emotional responses can be a sign that people actually care about you. Take that moment as an opportunity to build that connection (and even have your own emotional moment if needed).

Some families have found it life changing to be able to cry together. Others noticed that their loved ones were happy to finally have a diagnosis because that means you are closer to getting treatment. Consider who in your inner circle would benefit from this type of approach. Trust your gut.

Provide Written Information

This is one of my favorite approaches to sharing information about your chronic illness. Written information can come in different forms, including email, handouts, medical articles about your condition and even related social media posts.

You can provide information to help educate them on your chronic illness on their own time rather than needing to discuss it thoroughly at the time. It’s not uncommon that your loved ones may need time to adjust and learn about it (just as you do), so this gives them the space and time to do it while preserving your energy.

Prepare Planned Responses

Planned responses help take the pressure off of you because you already know what you’re going to say about your health condition. Some examples of planned responses include:

1. “I have a health condition that makes me feel tired more quickly, so it helps to take more breaks during the day.”
2. “I haven’t been feeling my best lately, but I’m okay right now and enjoying our time together.”
3. “Thanks for asking how I’m doing. That means a lot to me…”
4. “It would be helpful if…”

Author Suzan L. Jackson wrote an amazing book called Finding a New Normal: Living Your Best Life with Chronic Illness. She has a chapter in that book where she goes into more nuts and bolts about “Who Do You Tell and What Do You Say?” I highly recommend reading this to give you more immediate support on how to approach the conversation. It’s life changing.

Next Steps for Chronic Illness Management

I help individuals and families who are living with anxiety, chronic illnesses and the emotional toll that it can bring. Therapy is a powerful tool that can help you continue talking about your chronic illness in a safe, supportive space. Although the journey with a chronic illness is hard, therapy can make it more bearable because you get to practice having those conversations during the therapy session, giving you more confidence and relieving your stress.

You can schedule your first appointment with me by booking a free 15-minute consultation call.