How can I support someone living with a chronic illness like Lyme disease? Whether you’re a friend, a family member, or significant other of someone with a chronic illness, you may have asked yourself this exact question. Offering chronic illness support can be a difficult task because not only does it require a lot of effort, it is quite different from the support you might provide for others in your life.
Many studies conclude there is a positive relationship between having a social support system and managing a chronic illness, yet another reason why knowing how to support someone properly is so important.
Who is affected by Chronic Illness?
We understand Chronic illnesses such as Lyme become a “third wheel in any relationship”. So as to be helpful, we’ve compiled tips for those who are supporting someone chronically suffering.
To those supporting someone with Lyme
To those of you reading this so you can better support a loved one with chronic illness, THANK YOU. We know it can be difficult to know how to help at all, but your efforts matter.
To those with Lyme
If you have a chronic illness and you’re reading this, we know how difficult your journey is and how hard you are trying. We hope these tips help express how you feel and how you want to be supported. Likewise, you may also be reminded of the role you can play in maintaining healthy relationships in your life, despite chronic illness.
Disclaimer: These are tips we have found to be helpful in our Lyme journey and the Lyme journey of others. However, each Spoonie is different and should be asked how they would like to be supported.
5 things to remember when giving chronic illness support:
1. Don’t feel like you have to give advice.
Just listen! It can be hard to know what to say without giving advice, but you don’t have to have a solution to their problem. There is a reason it is chronic and it’s because there is no right answer just yet. Plus, sometimes advice or even certain lines of questioning related to their treatments or diets can unintentionally feel like a judgement, and nobody enjoys that.
So what do you talk about?! While it may feel uncomfortable at first, talk about normal things, like what’s going on in your life. It’s weirder if you don’t. Just be grateful that you are able to do those things and be mindful of times when it may sound like you don’t consider your health to be a privilege.
How would you want to be treated if you were in this situation? No, this doesn’t mean trying to relate your experiences to being sick with the flu—it isn’t the same thing. Think about how you would want to be helped, but don’t try to act like you can understand the chronic pain that comes with chronic Lyme and chronic illness in general.
Actually try to learn about the chronic illness and chronic pain your loved one is going through. Chronic illness can be very lonely and isolating, so just be there. Show them you aren’t leaving and that they don’t need to worry.
3. Offer to help.
If you’ve ever been in need of help, you may have found yourself in the position of not wanting to ask for it. Or even accept it. We know it sounds like a lot, but instead of asking what you can do, offer actual suggestions.
“Can I come over and hear about your day?”
“I made some food. Can I bring you some?”
Chances are, the person with chronic illness wouldn’t want to impose, but it means the world when you go ahead and help anyways. Many sufferers of chronic conditions feel abandoned or isolated, so any form of outreach (even a silly text or GIF) can help challenge the belief that “no one cares.”
We get it. Relationships require effort on both ends, and when it comes to this suggestion, it places most of the effort on the shoulders of the supporter. However, part of a good relationship is recognizing when some of the responsibility needs to be shifted in order to make it successful. Or, realizing that both may be putting in equal effort, but the output just looks a little different than it did before the diagnosis.
4. Be willing to learn.
It’s easy to become skeptical of a disease you’ve never heard of before or of one that is in desperate need of more research. When it comes to commenting on the situation, be thoughtful about how much it hurts to have your pain discredited and take the time to learn from the person you’re assisting.
That can mean getting involved in your chronic illness community, whether that is in person or an online support group. If you want to learn more about their illness, they can dive in and ask questions from people who are educated on the topic.
For example, not only does LymeNow have a Facebook page for chronic Lymies, we also have a private Facebook group to provide a safe place to ask questions and connect with one another.
Remember, the person you love is still that person, even if they are sick. So, don’t give up on them! Try to see them as the person you know and love, even if chronic illness has temporarily weighed them down. Try to change with them and learn how to love them differently over time.
Consider asking questions like ‘On a scale of 1-10, how much pain are you in today?’ instead of just asking how they are doing. These specific kinds of questions can be a great tool for opening up the lines of communication.
Next, has your Lymie ever flaked on your plans? Yes, they may be blowing you off, but more likely their body just wasn’t up for a night out on the town. We can all relate to that on some level or another. A Lymie simply doesn’t have the ability to put on a fake-it like so many of us do. With chronic illness, there are good days and bad days, and the bad are really bad. So, rather than stress about the potential rejection just keep asking!
If you’re making plans with friends, you might think you are being sensitive to your friend by not asking them to join because you think they won’t be up to it. However, the thought counts and unless your friend has specifically asked you to stop reaching out, don’t decide for them. Give them the option, and let them choose.
While living with Lyme disease, a person may have occasional flare-ups (instances of intense symptoms). Other days their pain and energy levels may be manageable. Their levels will be up and down, but this doesn’t mean they don’t care about your well-being. Openly communicate how you are feeling, and what you need. You don’t have to be a robot. You have your own good days and bad days and if you are frustrated or disappointed, it is better to be open about it and talk about how you feel instead of becoming resentful towards your loved one.
6. Set realistic expectations.
Don’t expect those with chronic illness to be able to keep up or do all of the things they may have previously been able to. Just because you can push through fatigue, doesn’t mean they can or should.
In the case of Michelle and Jonathan, Michelle had Lyme when they were dating. They eventually got married, and even though Jonathan had an idea of what life would look like for him and Michelle, it can still be a challenge.
Jonathan is human and he can get disappointed in Michelle’s energy levels. He wants to be there through all of the bad days, though, because the good days make up for it. Knowing there will be bad days is part of chronic illness, but this doesn’t mean the person you love is not still the same person you love.
One final piece of advice for those supporting someone with Chronic illness
If you were to forget all of this advice, just remember this one thing: Treat someone like you would want to be treated if you had a chronic illness. You wouldn’t want to be told you look tired, but you also wouldn’t want to be told you look great. You wouldn’t want someone to think you were faking it for attention, and you probably wouldn’t want to ask for help. You don’t have to have all the right answers, but taking the time to listen can make all the difference.
We think living with Lyme disease and chronic illness support are two of the most difficult tasks that could ever be asked of a person. This may seem so overwhelming. You may feel like you shouldn’t even bother. Our advice to you is to try! Chronic illness support is a learning process and your loved one will appreciate the effort you are making.