May is Lyme Awareness Month. Having multiple friends who struggle with chronic lyme – and many of its awful physical and mental companions – means that this issue hits close to home. As I was struggling to find a topic that raises awareness in a way that is relevant, respectful, and relatable (even for those who don’t struggle with chronic illness), I came up with this idea: I wanted to address how to be a good friend to someone with chronic illness.
I would be willing to bet that everyone knows someone suffering from a chronic illness. It can be difficult to know what to say and what not to say. You may be wrestling with how you can properly support and encourage this person without belittling their struggle. One of my good friends, Sjanie, is a lyme warrior and definitely understands chronic illness. She graciously allowed me to ask some questions and she offered some great insights into her world. I feel that after talking to her, I have a pretty good idea of what is beneficial versus what is detrimental to say/do when connecting with someone who struggles with chronic illness. I hope that this article will offer you the same insight.
Without further ado, here are 5 “dos” and “don’ts” of being a good friend to someone who is struggling with chronic illness.
DO: Believe them.
They have to convince doctors and validate their struggles all the time. They are having to constantly prove they are sick in order to receive the help that they need. Don’t act like they’re crazy or force them to prove themselves. They have to do that enough already, and your friendship should be a safe place from that. Believing them is helpful as it shows you respect what they are going through.
DO: Research and ask questions.
Their chronic illness is a big part of their life and they don’t mind sharing it with you. Sometimes it can even be a relief for them. Lots of people tend to avoid the “elephant in the room” but that just makes things awkward. Trying to skirt around and avoid questions that bring up their chronic illness is uncomfortable, difficult, and puts strain on the relationship. Don’t talk about it all the time, but be comfortable with asking questions and receiving honest answers. If you really care about the person and what they’re going through, researching their illness is a great way to show this. Sjanie also stated that when she hears people are doing research on Lyme, it really encourages her.
DO: Check in regularly.
A lot of people are really good at texting/calling/visiting in a crisis, but often forget about day-to-day support. Just because everyday is not a crisis doesn’t mean that they aren’t still struggling. During these times, being left without visible support can feel isolating. There is persisting symptoms everyday and checking in can be very encouraging during these daily, less visible struggles. It doesn’t have to be visiting all the time, because that you can do too much. Just little things like texting, calling, emailing, or even snail mail, show that you are standing by them and haven’t forgotten them in their struggle.
DO: Be flexible.
People with chronic illness often struggle to make plans in advance. And if they do, it can be difficult for them to keep those plans. They most likely made those plans on a good day, and they never know when a bad day is going to hit. Be understanding and okay with them cancelling (even if it’s last-minute). Sometimes, all they may be able to do is just sit with you or lay in bed while you visit with them. Keep in mind what they feel is within their ability for that day and try to adjust to whatever they’re up for. For them, knowing people are flexible takes a weight off, because they often feel bad when they have to cancel plans or plans change.
DO: Include them in your plans and invite them (even if you already know they can’t come).
Inviting them (even if you already know that they won’t be able to come) helps them to feel included and loved. Excluding them from plan invites for fear of making them feel left out just makes them feel isolated.
“If you do any of the things on the ‘dos’ list, it does make a difference. Believing us, doing these things, it encourages us and it makes the illness a little more bearable.” – Sjanie Wildeboer, Lyme Warrior
This includes (but is not limited to):
- Assuming they are overreacting, being dramatic, or faking their symptoms
- Assuming they are doing this because they are being needy or want attention
- Assuming that because they look “okay” or “better”, that they are feeling okay or better
- Assuming you know what they’re feeling because you’ve been sick before or had similar symptoms – every person’s struggle is different
These are only a couple of examples, and I’m sure there are many more that can be added to this list. As a rule of thumb, always ask questions (even if they’re hard), rather than assuming. Ignorance often accompanies the biggest blows.
DON’T: Expect positivity.
People with chronic illness like when people ask how they’re doing, but they want to be able to give an honest answer. They don’t want you to expect them to be positive all the time, because that’s simply unrealistic. It’s okay to not be okay, and they want people to be okay with them not being okay. And by all means, never tell them to “buck up”, “think of the bright side”, “be more positive”, or anything along those lines.
DON’T: Try to make light of a their unpleasant situation.
This one is hard because it usually comes from good intentions and a look-at-the-bright-side attitude, but it feels like a slap in the face. Minimizing their struggle, or making light of it by saying how you would enjoy certain parts of their treatment (or other similar remarks) makes them upset. It discourages them by making them feel like their struggle is invalid and you don’t understand it. It’s hard to explain this one, but one specific example would be saying something like, “Wow, you’re so lucky you get to stay in bed all day! I would really enjoy a break like that.”
DON’T: Try to be a doctor.
Unless you are an actual doctor, throw any sentence that starts with, “Have you tried…?” out the window. Don’t offer remedies, advice, or solutions. Trust me, they have tried almost everything and done so much of their own research that this just becomes annoying.
DON’T: Act like they’re contagious.
Don’t avoid them or keep them at arm’s length. They can sense this is happening and it’s super awkward. Educate yourself so that you can overcome this fear and continue growing in your friendship with them.
“When people assume things it makes us feel less valid, like our situation isn’t real. It will do more harm than good. I know that people are well-meaning, but the reality is: there is still a lot of ignorance. Ask questions. Do research.” – Sjanie Wildeboer, Lyme Warrior
Please also note that not all of these “dos” and “dont’s” may apply to everyone with chronic illness. Though they may be true for the majority of the population suffering with chronic illness, every person’s struggle is unique. The only sure way to know how your friend would like to be supported through their illness, or what things truly bother them, is to ask them. The things mentioned above are just things that Sjanie (and many of her friends in the spoonie community) personally found to be uplifting or discouraging.
Would you like to participate in Lyme Awareness Month?
Here’s how you can get involved.
- Educate yourself on Lyme disease – Sjanie’s blog is a great place to start. If you want to dig deeper, she has also combined a list of resources that she considers to be accurate and educational.
- Share graphics or posts relating to Lyme and use the hashtags: #LymeDisease, #LymeAwareness, #LymeDiseaseAwarenessMonth, and/or #ChronicLymeDisease.
- Share any of Sjanie’s blog posts, posts from other people struggling with Lyme, or this post to help raise awareness and keep the conversation going.
If you are interested in learning more about lyme disease or Sjanie’s personal struggle with chronic illness, please check out her blog, sjanievslyme.blogspot.com.
Do you think we missed any important dos or don’ts? Let us know in the comments below.