Made With RA: How to Create Your RA “Go Team”
“我需要你的帮助。”
There will always be times in your life when you can’t do it all alone. When you have rheumatoid arthritis (RA) you may experience more of those times, but actually saying those four little words can feel so difficult as we admit we can’t be perfectly independent. Here’s a fact: Most of us live our lives based on interdependence as we create informal ways to get and give support in most areas of our lives. And when you have RA, creating a support system could help improve your quality of life, as well as make living with pain and fatigue a little easier.
A social support system is a group of people we can turn to for practical and emotional support. Almost everyone has some form of support system in our lives, sometimes multiple ones that overlap or exist in a specific area. For instance, groups of parents create carpools to get kids to after school programs, family members may serve as emergency babysitters, a neighbor shovels snow off your driveway, or members of a church deliver casseroles if you’ve had surgery.
当然，当你做一些暴风雪或手术时，当你做一些碎机骑行时，可以更容易收到帮助。当有人为我们和慢性疾病做某事时，我们被教导往复运动，并且您可能无法使用慢性疾病。我多年来一直在挣扎，对朋友和家人感到非常不平等，他们正在帮助我的实际任务。最终我意识到我确实互动，但在其他方面。一位朋友可能会帮助我清洁和组织我的公寓，而我通过倾听他们作为单个父母或通过研究难以找到的物品来响应艰难的时间。与朋友和家人关系的股权与平等相同。你可能无法铲他们的车道，但你有其他技能有助于这种关系。请记住，当某人是支持网络的一部分时，您也可能是他们团队的成员。
当您开始考虑创建社交支持网络时，请记住多元化。就像在浪漫的关系一样，没有人可以满足您的所有需求。我曾经看到一个引用，说明人们是“散发的朋友”。也就是说，你可能有一个朋友为深处对话，另一个是电影之夜，一群母亲，让你通过小孩岁月，你的ra窥视谁了解慢性疾病。让我们来看看你在支持网络中需要的一些角色。
升降机。There comes a time in everyone’s life when you’re sobbing in the middle of the night and it’s a treasure to have someone in your life that you can call at any time, even at 2 a.m. I’m lucky to have few (of course they can call me, as well). None of us take advantage of this privilege often, but all of us have at one point or another been desperate enough to call. There is nothing quite as comforting as hearing a sleepy voice telling you that of course they’ll listen. If you haven’t yet found your personal helpline, remember that hotlines are available 24/7. If you ever feel desperate, please reach out for help. Professionals at the National Alliance on Mental Illness are available at 1-800-950-NAMI (6264) orinfo@nami.org.
战略家。A friend who will listen is invaluable, but so is the one who’ll help you make sense of it all. When your condition takes over and you don’t know what to do for a complicated illness in a complex medical system, it’s useful to have a friend who can help you untangle the confusion and make a plan. Personal experience with chronic illness can be a plus in such a situation. My secret superhero club is the online RA community. Posting a tweet with the hashtag #RheumTwitter or a question in an RA Facebook group can help me get questions answered and find ideas for the next steps.
超级英雄。A support circle should always be based in respect and dignity, recognizing that ultimately you know best what you need and when. But every now and again, you need someone who’ll recognize when it’s time to walk in and take over, even if you claim everything’s fine with a capital F (which in those situations is usually a lie). When I’ve been in a bad spot for several weeks, I sometimes get tangled up in feeling like a burden if I ask for help, so I keep quiet. A long-term friend knows the signs and will help anyway. Sometimes it’s bringing over food, other times it’s making arrangements to help me with an overwhelming task. Inevitably, it’ll be just the thing I need the most.
松鼠。When you can do nothing but get through a bad flare or crisis, you’ll need someone who can help you focus on other things. In short: You need a random, attention-grabbing distraction. If you’ve ever watched the movie向上，你知道如何谈话的狗被松鼠的存在分散了注意力. A couple of decades ago, my father had a catastrophic stroke while away from home. When there was nothing to do but wait and worry, a friend kept me company and steered the conversation to politics and art. Sometimes, the human version of“看,松鼠!”can be exactly the right thing to say.
捏击。As you build your support team, try to also include someone who will be able to essentiallybeyou when necessary. This is the foundation of a carpool, every member taking turns to drive a pile of kids to gymnastics or scouts. When you’ve been hit with a flare, it can be a huge relief when someone else steps in to pick up your kids from school, drive you to the doctor, or take a package to the post office.
你的friends or members of your family may already fill some or all of these roles, but it might be useful to have an actual conversation about the ways you can support each other. For instance, one friend may be your Pinch-Hitter and you are their Strategist. As well, make sure to talk about the importance of honesty, so both of you feel safe to admit if you are not able to help in a particular situation. This keeps the relationship free of potential guilt or resentment, focusing instead on positive support.
