Dear Lymie friend, you have not only acquired a disease, but you’ve also acquired the responsibility of learning to communicate difficult things. The good news, however, is that even though bumbling through a new disease is awkward, being a good communicator is an awesome life-long skill.
Full disclosure: In my five years of being symptomatic, I’ve learned a lot… mostly through error. I still have a lot more to learn, but the things I’ve picked up along the way have been awesome — helping me communicate about my illness and strengthening many of my relationships. The things I want to talk about are useful for anyone. They’re simple. These things have been helpful for me to learn, and I hope they are helpful to you to think about too:
- Communicate how you REALLY are to those closest to you. Granted, I know you won’t want to share your health-journey with everyone, and I highly suggest you don’t. But, for the people in your life that you love dearly, you’ll want to share with them what your life is like. They’ll be scared for you. They won’t be sure if it’s okay to ask questions, or they might ask too many questions (remember that they’re scared?). Communicating how you REALLY are can help them be settled and ultimately make your relationship easier. If they understand how badly you’re hurting, they will understand why you’re slow to communicate or have to cancel so many plans. It’s both helpful to them, and a safe-guard for you. If they know how you truly are, they can support you better.
- Communicate what your limits are. This is a tough one! It’s hard to know what your limits are, because your symptoms change almost every hour. This is a longer discussion (perhaps for a future post), but learning your limits is important for you and for your loved ones. They will forget how sick you are, because you don’t look sick. They’ll plan vacations and holiday schedules that you can’t keep up with, and it’s up to you to be honest about what you can and can’t do. The more you communicate your need for rest, the more they can adjust their expectations for their time with you. Those are special occasions, sure… but there are every day examples too. You’ll plan a lunch or rsvp to bring a cake to a party that you have to cancel last minute. If you let people know ahead of time that your “yes” is a “yes” in your heart, but that actually you’re always a “maybe”… they can plan to be flexible. That makes it easier for you to feel like it’s okay to listen to your body and cancel, and it helps them make back-up plans.
- Communicate how loved ones can help you. They’ll want to help. They may have ideas of how to help you, or maybe not. But, it’s up to you to accept it or to ask. Now, you might not be sure what is helpful… It takes some thought. A way to figure out what is most helpful is to make a list of the things that most stress you out. Then, ask others to do them for you! Genius, huh? Here are some things I’ve asked for help with in the past: rides/emotional support for doctor’s appointments, lunch delivered to me, freezer meals from friends that I can pull out when I’m too tired to cook, friends doing my grocery shopping, letting my husband call the insurance company and figure out all of the craziness for me, and prayer on particularly bad days. Letting people see you in your hard moments is vulnerable, but they are also the times when you most need to feel loved and known. Letting people serve you will ultimately bless them as they get to feel included in your life. And let’s be honest… help is… well helpful.
- Ask for forgiveness when you misstep. Frankly, I spend a lot of my life apologizing. Granted, being sick isn’t “my fault”, but I am not the only one living with the consequences of my sickness. I cancel appointments, lunch dates, and family get-togethers all the time. My heart would be to go, but my body says “no.” I also forget important things, sometimes REALLY important things. It seems like no matter how many reminders I set on my phone, post-it notes I leave on the mirror… I can’t remember many things. My brain is confused and forgetful. I don’t mean to forget, but my forgetfulness often means that people go days (or weeks or months) waiting on a response from me. Oh dear! I also fly off the handle sometimes. I hate this one. This one is the worst. I’m not actually angry (okay, sometimes I am), but I’m moody because I’m in pain or angry because I’m having ANOTHER seizure in the lobe that’s responsible for my emotions (now, that’s seriously not fair). My husband gets the brunt of it. He knows I don’t mean it; he knows that I’m in pain. BUT I care about him deeply. I’d never want to hurt him, and it’s always worth it to apologize — even when it’s out of my control — in order to communicate that his feelings (even if they aren’t hurt) are very important to me. Dear friend, you will have similar opportunities to apologize for your missteps. Though a lot of things are unintentional or even out of your control, choosing to acknowledge that you may have hurt someone’s feelings or inconvenienced them will ultimately help your relationships. Apologizing even for little stuff is important, as it communicates “I love you so much that I would never want anything to be between us.” Isn’t this a funny point for me to include? Being good at apologizing is a skill everyone needs, not just sick people.
- Look for every opportunity to show gratitude. My husband is my hero. I’m daily aware of the ways he cares for me. It’s not only the big things (though the big things are awesome — like that he works really hard, so I don’t have to… all the while paying for my medical treatment) but also all the little things (like jumping up to get me water when he notices I’m out, or heating up my rice bag before I can even ask). It’s made our marriage very sweet, very rich. He serves me by taking care of me, and I serve him by acknowledging him over and over. They’re not the same, but they do wonders for both of us. We both feel dearly loved. Dear friend, not only will fighting to be grateful help you feel more hopeful about life (because you’ll be reminded that your life still has good things in it), but it will greatly bless the people around you who are trying to take care of you. It will keep your heart cheerful and soft, instead of growing bitter and hard-hearted.
Constant pain has a way of cutting off life, cutting off relationships. It’s so easy when you don’t know what to say, when you feel lost in a world you don’t understand, to get stuck and stop trying. Good communication takes effort, and it’s hard when you’re sick. The things I’ve talked about above are the things I’ve done to keep fighting for my relationships. I try my best to communicate well.
Some relationships will likely fall away. Sometimes it’s merely a statement that both you and that other person now lead different lives, and after all… you don’t have the energy to keep up with everyone. Other times (the more sad times), it can be a statement of how they’ve been hurt by your miscommunication or chosen not to believe the best in you. All you can do, my dear friend, is to out of the integrity of your heart, try to do your best with what you know how to do. I know that’s not always a comforting thought, but there is some measure of peace in knowing that you tried to do all that you knew how to do. Being sick doesn’t change the fact that we can’t control anyone’s actions but our own. So, let’s all try to do our best, being willing to bumble around and make mistakes, and then apologize for our missteps where we can.
P.S. You may have noticed, all of this stuff is “life stuff”… It’s not necessarily “sick people stuff”. The reason why I talk about it is that being sick tends to bring a lot of opportunity to mature as people. It’s like becoming sick is the transition from black and white TV to color TV. It highlights so much more what is really going on, and gives you a lot of opportunity to grow.