How To Discuss Your Chronic Illness With Friends and Family

As you begin to navigate life with chronic illness, communicating with the people around you and learning how to discuss your chronic illness is crucial. Your energy levels and capabilities have changed – either slowly over time or seemingly all-at-once – and your loved ones need to understand your limitations and support your new normal, as well as understand the steps you are taking towards a sustainable routine.

Your friends and family want to see you get better, but insistent positive talk (“have you tried meditation?”) may have unintended negative effects if not paired with the support you actually need day-to-day.

These talks are likely to be difficult cognitively, physically or emotionally (or likely all three), but they’re also vital.

Open, honest conversations about your condition and specific needs is the best way to set clear expectations, encourage understanding, and help others to help you.

Approaching The Chronic Illness Discussion

Start by having compassion for yourself and your current situation. You are going through a traumatic health event, even if some days are better than others. Be gentle with yourself and allow space for both the emotional and physical boundaries that are required to rest and (hopefully) eventually recover a better baseline.

In this article we’ll discuss how to give your loved ones the information they need; explain your symptoms, physical and cognitive challenges, and what they can do to support you. Let them know that while your chronic illness might still be new, the impacts can be serious and long-lasting. Answer any questions patiently and honestly – but do protect your own emotional health, especially if you find yourself having to repeat the same thing over and over.

In my opinion, the most-fitting phrase in this situation is “Be Kind, But Take No Nonsense.”

Step 1: Who Should I Tell First?

Speaking with your close friends and family members should be a top priority once you’re ready to open up about your long hauler / chronic condition. They know you best and will likely be your primary support system moving forward.

Important Note:

By ‘close’ in this instance, my suggestion means ‘emotionally’ and not ‘locationally’ or ‘by blood’. If you feel more comfortable discussing with your second cousin than your parents, don’t force yourself to discuss with your parents first.

The idea for these initial conversations is to help you get comfortable talking about your illness in a supportive, safe environment)

The longer you put off discussing your condition, the less support you may receive in the earlier days (since they won’t know you need any!) which often has unfortunate negative consequences for your health baseline as you attempt to push yourself too hard due to lack of assistance.

However, it’s totally understandable to feel nervous, so it pays to be prepared.

Step 2: Preparing to Discuss Your Chronic Illness

Unfortunately, there’s not always the opportunity to prepare yourself for discussions about your health situation. But if you do manage to find some time, it’s helpful to consider the following, most important points:

  1. What your illness means for you day to day
  2. What support you might need.

If your situation is more mild-to-moderate, you might find that you want to have a more in-depth conversation. In such cases, here’s an extended point list:

  1. How you’re going to describe the illness.
    • What is it called?
    • How did you get it?
    • What ‘chronic’ means in this context.
    • How does it affect you day-to-day?
  1. What you’ve already done in terms of tests.
    • Which tests finally made your doctor give you their diagnosis?
  1. What (if anything) you’re planning to do next.
    • Further tests
    • Medication options
    • Tracking & self-learning / pacing

Remember📌

Most people don’t manage to grasp the concept of ‘not curable’ straight away. Let them know that you plan to learn as much as possible and do what you can to manage and track your illness. This will help them better understand the work involved just to hold your baseline as steady as possible.
  1. The support you might need going forward.
  2. Any longer-term considerations.
    • How might the severity of your illness change?

Lots of folks also find it useful to make a note or two and have them handy while having the conversation. Don’t be afraid to refer to notes if you need them – anything that supports you is a good thing. It’s harsh, but chronic illness doesn’t care about your pride or your can-do-attitude.

During Your Conversation

Every relationship dynamic is different, which is why it would be impossible for me to give you a definitive Dos and Don’t list about exactly what to say to each person in your life.

However, there are a number of ‘rule of thumb’ suggestions which should work for the majority.

Step 3: Be Open and Transparent

Be transparent about what you’re experiencing: explain your symptoms, limitations, and needs clearly but without unnecessary detail unless they ask. Help them understand this is a “new normal baseline” as you work to recover and try to find ways to improve or stabilise (according to the severity of your condition).

Here’s an example:

Question: “Why can’t you get some fresh air for just ten minutes? You’ll feel loads better!”

Answer: “My energy doesn’t work in the same way as yours. If I spend 10 minutes outside today, I might have to spend the next 3 days in bed to recover. I need to save my energy for more important things like personal hygiene and eating.”

Unfortunately, sometimes loved ones can only ‘hear’ from people they deem to be ‘experts’, rather than your real lived experience.

In such cases, provide information from reputable sources on what the recovery process can look like. This helps set realistic expectations and gives them resources to learn more about what you’re going through. Let’s use the same question as above in our example:

Question: “Why can’t you get some fresh air for just ten minutes? You’ll feel loads better!”

Answer: “I have something Doctor’s call POTS/PEM, which means my blood oxygen/energy isn’t like yours. Pushing myself even slightly over what my body can do will cause me to crash. Here’s some info about it from [Insert Doctor’s Name Here].”

The more they understand, the better equipped they will be to offer you empathy and support. Be open and honest, but only disclose what you feel comfortable with.

Step 4: Get Specific

Don’t expect others to anticipate what you need. Most people will want to support you but may not know how unless you speak up.

Finding the balance between support and independence can be super difficult and often one of the most changeable things when you have a chronic illness. Something you did fine by yourself last week might need tweaking today, or that bit of housework that was impossible a month ago is something you can now do in stages by yourself, as long as you get help with another thing in its place.

The more specific you are, the better your support can be.

Don’t Say: I might need help with my grocery shopping sometimes.

Do Say: I’ll need someone to deliver heavy things like milk and potatoes and cans of beans once a week.

Don’t Say: I’m fine with cooking.

Do Say: I’m able to prepare meals, but I can only prep for myself, and I often have to do things in batches so I have something healthy to eat on the days I’m not feeling well.

Don’t Say: Can you help with the kids twice a week?

Do Say: Could you take the kids on Tuesdays and Thursdays after school for play dates until 6pm? I’ll be able to do my batch cooking / take a shower / rest (delete as appropriate).

Step 5: Explain Your Symptoms Succinctly

First, start by explaining that symptoms from a chronic condition are just that – chronic. But this doesn’t mean they are always consistent. For example, being able to talk on the phone for a few minutes on Tuesday doesn’t mean that you’ll be able to do the same the next day or even the following week. Any recovery is often a lengthy process without a definitive timeline.

It’s important for your friends and family to understand that your symptoms come in both physical and cognitive forms. Explain, for example, that you fatigue easily, are unable to navigate stairs without aid, have trouble concentrating, or experience memory lapses. Let them know if loud noises, bright lights or other sensory stimuli bother you.

Depending on your current level of severity, you may not need to list every symptom to every person you talk to. Giving folks an unabridged version of the challenges you face early on may make it more difficult for them to comprehend in one go. Focus on the primary challenges you face so your circle can contextualise the support you might need going forward.

Step 6: Explain Your Limitations

Now’s the part where you can tell your loved ones just how your chronic condition affects you day-to-day. Be specific about your limitations so they understand your new normal.

For example, you might say:

“Loud environments and multitasking trigger my symptoms and mean I spend hours or days recovering afterwards. I have to limit strenuous activities and social engagements. My energy levels fluctuate, so I may cancel plans at the last minute, even if I really don’t want to.”

Convey your new boundaries clearly and compassionately. Let them know certain activities may be off limits, or you may need to cancel plans at the last minute. Ask them to be patient as you learn to determine what is manageable.

Step 7: Discuss Your Capabilities

Be clear about what you can do to avoid overcommitting yourself or resentment from others expecting more of you. You may need to say, “I’m not able to drive long distances or attend crowded social events right now, but I’m happy for you to come here for coffee as long as you give me a bit of notice.” Don’t feel guilty about setting necessary limits. Your health must come first.

Understanding your capabilities is an important element of retaining as much independence as possible, without putting yourself at risk of over-exertion.

It’s vital to be honest not just with your loved ones, but also with yourself. This isn’t about picking and choosing the ‘most fun’ things to spend your energy on and expecting your friends and family to pick up the rest; it’s about maintaining your baseline and reducing any possible long-term resentment on either side.

Step 8: Set Clear Boundaries

Don’t be afraid to set boundaries when you need to limit interactions to preserve your energy and health. Clarity about your limitations should help with this. Let people know specifically what you can and can’t do right now. It will probably be difficult for everyone involved to adjust to begin with, but over time people will get used to your boundaries.

For your ongoing health, the most important thing to remember about boundary setting is being consistent and following through. Once you start moving the goalposts from one day to the next at the detriment of your health, you erode your ability to clarify these limitations and it will turn into a difficult cycle to break.

After The Conversation

So you’ve spoken to your trusted circle about your current chronic illness situation: your symptoms, limitations, capabilities and boundaries. What happens when they’ve gone away and have had time to digest your new reality?

Check in Regularly and Update as Needed

Continue communicating with your circle as your condition changes. Let them know if certain activities or interactions have become more difficult or if you have found new ways of coping and managing symptoms.

Keeping people in the loop with an open dialog will help avoid confusion and ensure you receive the best possible support. With patience and understanding, you can work through challenges together.

Practical Tip 🛠️

If you have someone living with you – a partner, family member or carer – you can let the rest of your circle know that they may be the one providing updates on your behalf depending on the severity of your condition.

Preparing for Questions

To prepare for the inevitable questions from loved ones about your condition, have resources on hand to share. Provide them with reputable websites, articles, or graphics about your chronic illness from reputable organisations and patient advocacy groups. These resources can help them understand what long haulers experience and why certain accommodations are necessary.

When questions arise, remain patient and remember that your friends and family care about you. Politely but confidently explain that what you have is a serious medical condition, even though its effects are not always outwardly visible. You may say something like:

“I appreciate your concern. Long COVID causes real and debilitating symptoms for many people, though they’re not always obvious.”

or

 “I understand your confusion about how I seem to be fine one day and not the next. M.E. is still being studied, but medical experts confirm it has major health impacts, and I continue to experience many of them.”

You may also re-share specific examples of how your illness affects you more specifically, but only share what you’re comfortable with. For example:

“Simple tasks like food shopping make me crash for days afterwards. I have to pace myself and limit activities to manage my symptoms.”

or

“I struggle with cognitive dysfunction (‘brain fog’) and memory issues, so please bear with me if I seem forgetful or repeat myself at times.”

Let your close circles know that you hope your condition will improve, but there is no definitive prognosis and unfortunately the situation may get worse over time instead of better.

Your health needs may fluctuate, so their patience and support are both appreciated and necessary. Continue to update them on how they can specifically assist you, especially when your needs change.

With open communication and education, you can set boundaries when needed, but also express gratitude for the support you receive. Managing a debilitating chronic illness is difficult enough without feeling misunderstood by those closest to you. With compassion and commitment to mutual understanding on both sides, you can maintain a consistent baseline.

Be Patient, But Take No Nonsense

Many people simply do not have a frame of reference for what a debilitating chronic illness actually looks like in practice. And for under-researched and lesser-known illnesses such as Myalgic Encephalomyelitis and Long Covid, many will know only what mainstream media has told them (most of which is, unfortunately, clickbait).

But if your circle say things that are hurtful or ableist (e.g. “You should stay positive. If I were you, I’d just be more mindful or get a better doctor”), don’t be afraid to call them out on it if you feel safe enough to do so.

Unfortunately, not everyone will be understanding or open-minded. If you experience someone continuously questioning or making your lived experience feel invalidated, it’s important to remind yourself that it is not your fault. They’re just an asshole.

Where you can detach yourself from these situations you should, although that may not always be an option depending on individual circumstances.

Prepare an ‘FAQ Quicksheet’

If you have a large circle, it might be worth prepping an ‘FAQ’ notes on your phone that you can copy and paste when you find you’re answering the same thing over and over (and over… and over…)

There are a few Chronic Illness FAQ examples at the end of this article to give you a solid starting point.

Don’t Feel Guilty About Saying “No”

As you adjust to life with long-term symptoms from Myalgic Encephalomyelitis, COVID-19, or another chronic illness, the importance of open communication does not mean you should feel obligated to ever say “yes” when asked to commit your time or energy. We touched on this briefly before in the article, but just to reiterate:

It is perfectly acceptable, and even necessary, to set clear boundaries by saying “no” when an activity exceeds your capacity.

Declining invitations or requests in a polite yet straightforward manner can help ensure you avoid post-exertional malaise or relapse. When saying “no,” offer a brief explanation for your refusal without providing unnecessary details about your condition. For example, you might say something like: “Thank you for the invitation, but I have to decline this time in order to avoid overexerting myself.” There is no need to apologise or feel guilty for putting your health and well-being first.

Your close family and friends will hopefully understand if you’re unable to always participate in social events or activities, especially if you’ve openly discussed your situation with them. 

However, for casual acquaintances or colleagues, it may help to provide a general sense of your limitations and needs without revealing sensitive medical details. For instance, you might say that you have a “chronic health condition” or “ongoing medical issue” that requires you to avoid overstimulation or closely monitor your energy levels. Offer to provide more details over time as your relationships develop, but only share what you feel fully comfortable with.

The key is to be upfront, consistent and compassionate with yourself and others. Don’t feel pressured into commitments that could worsen your symptoms. Focus on living within your limits so you can maintain your strength and stamina over the longer term.

Chronic Illness FAQs: How to Respond to Insensitive Questions and Comments

As a long hauler, you may face many questions from friends and family about your condition and limitations. It’s important to respond to these inquiries sensitively but honestly, to help others understand your new normal.

Common Questions and How to Address Them

“When will you get better?”

“At the moment, there’s no actual cure for my chronic illness. There are things I can do like pacing and certain medications that will hopefully mean I don’t get worse in the short to medium term.”

“How did you get it?”

In the case of Long Covid, you’ll be able to share – within your comfort levels – how you got infected.

In the case of ME, explain that there’s no definitively known one-way of contracting the illness. If you have an idea as to the cause (for many it’s an infection, whether viral or bacterial) then you can let them know.

“Can’t you just push through it?”

“ME/CFS doesn’t work like a normal illness. Pushing through can actually make me permanently worse, which is why treatments like Graded Exercise Therapy have been removed from medical guidelines. The best thing for me is PACING and resting where possible.”

“Have you tried [supplement/diet/exercise]?”

“I know you’re trying to help, but I promise me and my doctor are looking into everything possible. There’s no known cure, and at the moment the only scientifically-proven treatments are rest, pacing, and managing symptoms. I’m keen to try anything that might have a positive impact, but I also have to be really careful with unproven supplements or regimens since they could be actively dangerous to my condition.”

Remember📌

While facing scepticism or insensitive comments is difficult, remain patient and remember that many people simply don’t understand long haulers and post-viral illness. Provide information from reputable sources, set clear boundaries, and don’t be afraid to repeat yourself.

Wrapping Up

As you navigate life with chronic illness, honest communication is key to maintaining your health and support network.

By explaining your condition clearly and specifically to those around you, setting reasonable boundaries, and focusing on mutual understanding, you empower yourself and educate others. 

While it shouldn’t be the burden of those living with the illness, each small act of communication and compassion moves us closer to a society which acknowledges and accommodates people living with chronic illness. 

Over time, family and friends will become the voice that so many with severe chronic illness need – both as allies and advocates for research and a more inclusive society.

Have We Missed Anything?

Let us know in the comments below if this blog post helped you to discuss your chronic illness with family or friends, or if we’ve missed a step or a resource to make this article even more useful.

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