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How to Communicate With Loved Ones About Chronic Illness

The transcript can be found under the video.

Are you having a difficult time getting along with family and friends because of your diagnosis?

You might feel like they're not supportive of you or they're giving you unsolicited advice about treatments you should try.

You might be struggling with feeling like you’re a burden in the relationship or trying to figure out how to forge a new path forward in this new changed relationship.

If you're a caregiver of someone with an illness, you might be wondering what's the best way to approach them. It seems like you try to help them, but they get defensive easily and you're not sure what the best way to go about this is.

Relationships are extremely important to our well-being to our physical to our emotional health and they're deeply fulfilling. They change though because of a new diagnosis. That same fulfillment that relationships bring us can of course remain but we do have to just adjust some things and change some things up. And these adjustments and changes are exactly what I want to talk about in today's video.

This video is for both caregivers or family members, as well as those with chronic conditions. Perhaps you could watch this video together and discuss some of these points and how they affect your relationship. I'll share some specific prompts that you can also discuss with your loved ones as the video goes on.

1. Handling Unsolicited Advice

People tell me that one of the most frustrating things for them when they're talking about their condition to family or loved ones is when they receive comments along the lines of: 'Have you tried yoga? Or acupuncture? Or this new supplement? Or have you seen this new study? How about this suggestion?'

These kinds of comments, although really well-meaning, do tend to hurt the person that's currently unwell. Sometimes, it makes them feel like they’re the ones to blame. These suggestions also sometimes tend to come across as demeaning, maybe it makes the person feel like they're already not trying hard enough, which in a way they already feel, because there's the symptoms tend to be so unstable and constantly changing that it can make you feel already pretty crappy about yourself. It can sometimes already make you feel like you’re not trying hard enough.

So, one of the prompts to discuss with your loved ones would be to identify the kinds of statements like this that hurt you. Have an honest discussion about the kind of suggestions and the kind of things that are said that are more hurtful.

Now, why do caregivers or loved ones make suggestions like this? Oftentimes, it's not necessarily because they think or feel anything negative towards you. It's actually not about you, at all. It's usually about them. As humans we tend to struggle a lot with complexity. When someone around us is hurting we, of course, instinctively want to jump in and help. So, naturally we look for solutions.

Now, because of this uncertainty and uncomfortableness with complexity, we tend to look for easy solutions. there has to be an easy solution and easy fix, so, I can help this person now asap. It's also hard for loved ones to put themselves in your shoes, if they haven't had an experience like this in their life. They might not easily understand it.

There's a strong feeling of powerlessness and people will do nearly anything not to feel like that. The only problem is this can result in a strained relationship, where maybe the loved one is pushing all kinds of treatments and solutions and the person is actually even less inclined to try these new things now.

There's nothing wrong with suggesting various treatments or things to look into, but it's the way you say it. So, another prompt would be to discuss with your loved one. If you do have an opinion or you would like them to look into something or treatment or something like this. What's the best way to say it? So, that both sides are kind of more or less on the same page. Instead of it feeling like an unsolicited suggestion or advice.

2. How to ask others for support

Also remember that while people naturally do want to help, support is not instinctive for most people. People do care but they just don't know, should they reach out? Do you need quiet time? They're uncomfortable and that tends to also make them freeze up and as a result, they don't know how to handle the situation.

They're going about it the best way they know how to. It's also important to acknowledge their support while also acknowledging that they're maybe not going about it in the best way. So, statements such as: 'I appreciate that you are trying to help, but I feel like this is not the best way to go about it'. Something calm, something neutral that gets both people on the same page again.

You can also help a loved one help you by telling them specific things that they can do, for example: If you want them to take you to the doctor, right? It would be nice if you could take me to a doctor appointment or if you can go on this website and read more about my condition or if you could just listen to me venting.

Also, it's useful to specify. Sometimes I just want you to listen to me venting, and I don't want solutions, I just want you to hear me talk about my feelings and I want to do that in an open space where you can just listen to me without providing solutions. That's extremely important.

3. Feeling like a burden

Another point that complicates relationships is the feeling like you're a burden on a loved one. Now, I want you to remember something that is very important and that is that you are not a burden. The illness may be acting like one but you in and off yourself are not.

There's an exercise that works well with maybe remembering this. I'm a very visual person, so, one of the things that exemplifies this well is... Imagine that there's an octopus above you and you're below it, and it's digging its tentacles into you, around you, wrapping it around you. Now, it's the octopus that's sick, that's unwell. And it's just wrapping you, so, you're not the one that's affected, but the fact that the tentacles are around you is the problem. This is what's making the relationship perhaps more sour or more difficult, not you.

This is not just for relationships, but in general, I think it helps distance ourselves, so that we're not so intimately connected and taking it into ourselves so closely. That way, we could also take it less personally, we could distance ourselves a bit better, and it's also helpful for caregivers sometimes to think of this analogy, as well. It could help a little bit with the frustration that occurs, right? When you're thinking: 'Okay, again, it's not the person, it's the illness, the octopus'.

4. Dividing responsibilities

One other important tip is about responsibilities. Responsibilities might have changed in the household, perhaps before you were the one that cooked, but now you're unable to. So, it's also important to have a discussion with your loved one about what's now reasonable for each of you to do. Perhaps you are the one that pays the bills or does the budget or does any kind of other organizing online or on the computer while your loved one cooks.

What's reasonable for them to do and what can you do for yourself, what do you both need help with. Is there perhaps someone in the community, or a friend, or somebody else, or maybe perhaps paying someone that can come and help with some of the other things that you need help with. So the responsibilities still are not just overwhelmingly fallen on the loved one.

5. Maintaining common interests

It's also very important to preserve the parts of the relationships that you loved. So, let's say you've always loved to go on long hikes together. How can you still maintain that love and that part of the relationship and those common interests and hobbies? Can you watch a documentary about the place you've always wanted to go see or use VR to maybe feel like you're there.

Maybe one your loved one can go to that one place you wanted to go to, maybe make a really detailed video, journal or video call you as they're there and share as many details with you. You know best, you know what interests and hobbies and what keeps that relationship alive that you love and how can you, you know, modify it so that it still fits the current situation. What do you love to do with your loved one? And how can you keep it alive?

I've given you a few suggestions in this video, and I hope that you found them helpful and that also inspired you to have a deeper conversation with your loved ones about some of the tweaks you can make.

I'd love to hear your biggest takeaway down in the comments below, as well. So, let me know. What's kind of helped you the most in communicating with your loved ones?

And if you want more videos like this, make sure to subscribe to my channel. If you hit the bell, you'll also get a notification each time I post a new video. So, take care and I'll see you next time!


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