This is a letter to all of the siblings of strong stripes, written by one of the best brothers in the world, who happens to be mine. He is one of the best writers I know, and graciously wrote this for all of us:
Dear siblings of strong stripes,
Every sibling relationship is different, just like every diagnosis is different, and every stage and period of those relationships are different too. I was very young when we knew about my younger sister’s diagnosis, and so the fear and confusion it brought has been a consistent part of our family dynamic. It changed the way I played with my sister a little, as her autoimmune disorder made it easier for her to bruise and bleed, but for the most part we were still able to be siblings and laugh and play and get in trouble for hurting eachother and all of the other things that young kids do. There were also times when I had to see her in the hospital hooked up to IV’s, and a few times when she was there for days or even weeks when she had a bad spell. To be completely honest, I never really processed through those things, but if I had, a lot of grief and fear would have spilled out. It’s crazy feeling so powerless, and at some point you learn that you can’t control very much. It never makes it easier to deal with being out of control, but once you understand it, you can stop blaming yourself or others and start trying to help with what little you’ve got.
There are two main ways you can relate to your sibling: either not really caring so much about them as much as it doesn’t interfere with your own life, or actively trying to love them and stay close with them. There have been times and long seasons in my life where I was in the first camp, and I would separate myself from her and her problems and then be impatient and not give much grace to her whenever we interacted. But seeing that you’ve taken the time to get halfway through this rambling blogpost, I’m assuming that you are currently in the second camp. Over the last few years, ever since I’ve given my life over to Jesus, I’ve been trying to help and get closer with my sister. It has certainly been a lot more deep and fun and rewarding, and I’ve learned how to empathize a lot more with the emotional side of what my sister is going through. Loneliness can be a really big problem with rare diseases, because there may not be many people around you, or even nobody in existence, who understands what you’re going through. Anxiety can also be a big problem. Fear and confusion and doubt are also dark emotions that strip away joy in your life. Despair and self hatred are probably the worst, feeling like you have no hope of happiness and hating yourself for the things that you do and feel. Those kinds of feelings won’t usually stay in your sibling, and many times they will come out at you, whether in yelling or in tears. And you are asked to react rightly to it, whether giving a shoulder to cry on, or soft and gentle words to calm a situation, or even just leaving the room if need be.
There’s no one guide to loving your sibling, because they are a unique person with a unique personality and unique needs. One thing that is always important: listening. You are probably not a doctor or expert that knows everything about how to help your sibling out physically, and even if you are, your sibling needs people who they can talk to and vent to, someone close who they can share the way they see life with. Listening takes focus and intent, caring about your sibling and what they’re feeling and who they are. You are siblings, you’ve experienced and been grown by many of the same experiences, so you’re one of the people who your sibling can relate the closest to. This gives you a base level of trust that's different from other people, a kind of trust that you need to honor and help to grow by being kind, or joking in the right way, or just by being present. Being present is a huge way to love your sibling as well, because when loneliness sets in, having someone with them who cares about them can help to remind them that even though they might be the only person with their disease, they have at least one person who cares about them in their corner trying to help them however they can. When you are there being a good brother or sister, they aren’t fully alone. Sometimes presence means not actually physically being present, sometimes it means a prayer, or a text, or a note, or a gift, and that just depends on who your brother or sister is, and how much they can stand you. Sometimes they will push you away and not want you around, and you need to respect that, forgive that, and be there next time even if they’re going to do the exact same thing.
Another way that you can help your sibling is by taking care of your own emotions. Finding the right ways to deal with your own anxiety and fear can lead into ways you can help your sibling through theirs. In any case, to be able to help your sibling, you should make sure that you’re also getting the help and support you need with the friends or family that you are loving through everything too. You are still a person, you still have emotions, and you still fail like everyone else does. Your sibling will understand that and find room to help out and forgive, even when they’re going through the symptoms of their disease. Because at the end of the day, you’re still siblings, and that is a rare and beautiful thing that you get to share. The Lord gave it to you, the Lord has called you to love them accordingly, the Lord is in control no matter what happens, and the Lord is there to comfort, guide, and care for both of you along the way.
You’ve got this.
Austin
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