Accepting your CFS diagnosis and starting the road to recovery feels difficult and painful. You need support on all sides as you go on this journey, which is why having an unsupportive family can make this an even harder time for you. Maybe they don’t take your diagnosis seriously, aren’t willing to help you on rough days, or don’t believe you when you talk about your symptoms.
But the good news is that time (and some important conversations) go a long way here. The key to getting more support from your loved ones is to help them understand Chronic Fatigue Syndrome and how it impacts you.
How to Help Your Unsupportive Family Understand CFS
Everyone who has CFS is different and has a different family situation. Here are 10 ways you can help your unsupportive family understand Chronic Fatigue Syndrome. Try out each of these strategies to see what works best for you and your loved ones.
Educate Them on What CFS Is
When you found out you had CFS, you did a lot of research, right? Now it’s time to educate your unsupportive family (because they might not seek out extra information themselves).
Try sitting down with your loved ones and walking them through what exactly Chronic Fatigue Syndrome is. You could print out some articles to guide your conversation or give them pamphlets with important information—check with your doctor for recommendations!
The most important thing here is patience. It may take them a while to learn and fully understand CFS, just as it took you time to accept your diagnosis. It can feel frustrating along the way, but with some time, they’ll understand.
Keep Calm When Talking With Unsupportive Family
If your loved ones’ misunderstanding of CFS comes from a place of not believing the condition is real, holding a conversation with them can be incredibly difficult and frustrating.
But the key to communicating with someone who isn’t listening? Stay calm and keep yourself from getting angry.
Hearing someone speak with an irritated tone usually makes you irritated in return, doesn’t it? Avoid that annoyance cycle as best as you can by approaching your conversation from a place of goodwill and acceptance. No matter how your unsupportive family reacts to your chat about CFS, you’ll be okay.
See What Their Comfort Levels Are With CFS
It’s really easy to feel like a family member doesn’t accept your CFS if they don’t talk about it or ask about your experience. But they may just feel uncomfortable bringing up such a personal topic with you!
Try approaching it casually in conversation to gauge their comfort level with CFS. Something like, “Hey, CFS impacts my life a lot and I know we haven’t talked about it much; do you have any questions for me?” should do the trick.
If they act uninterested or dismissive after you ask, it may be a sign to move on and try another method of helping them understand CFS.
Involve Them In Your Treatment
Involving unsupportive family members in your treatment plan is a really powerful way to show them what your life is like and how CFS impacts you. Bringing them along to medical appointments gives them an amazing opportunity to ask the professionals some in-depth questions that have been on their minds (and who knows — you might learn a little more about CFS, too!).
You could even involve them in an appointment by asking them to take notes for you so you can fully focus on what your doctor says. Then, read through the notes together afterward and answer any personal questions they may have.
Explain What You Find Difficult With CFS
Life changes when you have CFS…and you know that better than anyone! But some unsupportive family members may not be able to wrap their heads around why you can’t do the same things you used to or why you’re on a different diet or schedule than before
Clearly explain your limits and boundaries to them so there’s no confusion. They may be upset that you don’t join them for nights out anymore, but will understand after you explain that the loud music makes your headaches worse. Or maybe they miss your 6 AM hikes, but will accept them as a thing of the past when they know you can’t get up that early.
Once they get perspective on the situation and know your boundaries, you can work together to rebuild a relationship that supports you in your CFS journey and allows you to spend quality time together again.
Related: How to Cope with Your First CFS Crash After a New Diagnosis
Find a Support Group They Can Join
Sometimes, family members can be really educated on CFS, but still not know how to talk to you about it or act around you (awkward family gatherings, anyone?). Finding a local or virtual support group for families dealing with CFS can help.
In the support group, they’ll connect with others who know and love people with CFS and learn from how they handle their relationships. They’ll develop coping tools and strategies that can help them work through their feelings on Chronic Fatigue Syndrome and get the support they need to better support you.
Clearly Tell Them If They Do Something That Makes You Uncomfortable
Unsupportive family members can behave in a lot of different ways, but one of the most difficult things to deal with is when they belittle CFS, your symptoms, and your feelings. Remarks like, “Oh, it’s not that bad,” or “Are you sure it’s not just in your head?” are incredibly hurtful and damaging to mental health.
When you hear those awful comments, let them know right away that their words made you upset or uncomfortable. Tell them how that made you feel and do it clearly. They may not realize they’re hurting you or may not have the language they need to understand and talk about CFS.
If you’re in the right headspace for it, offer some suggestions on how they could have responded instead. “What you said really hurt me: my CFS symptoms are real and seriously affect my life. I’d much rather you acknowledge what I’m feeling and see if there’s anything you could do to help instead,” is a great way to approach the topic.
Walk Them Through a Typical Day In Your Life
Just like you’d educate your loved ones on what Chronic Fatigue Syndrome is in general, you should educate them on what it looks like specifically for you. Taking them through a typical day in your life (or as typical as possible with the unpredictability of CFS) is one of the best ways to turn unsupportive family members into key parts of your support system.
Sit down with your family and walk them through your usual daily routine step-by-step. Include the good, the bad, and the ugly. By the end of the conversation, they should have a good idea of how CFS manifests itself in your life.
If you’d rather not have the conversation face-to-face, try writing them a letter instead, or write a diary entry tracking your symptoms throughout the day and share it with them the next morning. You could also ask them to stay with you for the day so they get a front-row seat to your everyday life.
Speak Up for Yourself and Set Boundaries With Unsupportive Family
When your relationship with your unsupportive family gets really tough, you need to set strong boundaries with them. Honestly, you need boundaries anyway! Be assertive in setting your boundaries and speak up for yourself when they’re crossed.
Once you have clear boundaries in place, you can protect yourself both mentally and physically. You won’t have to do things that actively worsen your symptoms, like going on long walks without breaks or taking intense workout classes. And you won’t have to worry about constantly hearing negative comments about your diagnosis or your new way of life.
Work on Building Trust With Your Unsupportive Family
Having an unsupportive family can really take a toll on your mental health. It hurts to hear their negative comments and know that you may not be able to be in their lives the same way you once were.
As you go on this journey of family acceptance, also work on rebuilding trust. Maybe this is your first step or maybe this is something you work on constantly. Regardless, more trust creates better communication and stronger, more supportive relationships.
Dealing with unsupportive family members is one of the most difficult parts of living with Chronic Fatigue Syndrome. But using these strategies can help them understand what you go through on a daily basis and can rebuild your relationship from the ground up.