Sunday, March 17, 2013

Being a Better Friend

      Oh, how I love receiving post requests! It makes me so happy to write these, because I know that they will be useful to at least the person who asked!
       The question was this: "How can I be a better friend to a person dealing with a chronic illness?" I am SO glad you asked this question (not using your name for your privacy). I am more than happy to answer it. I've touched on the subject a bit before but here goes an intense and heartfelt post. 
       Now, by the wording, we are talking about someone who is already your friend. So you already know them, which is quite helpful. If you knew them before their diagnosis, then you are beyond lucky. I would even say that you don't fully know someone unless you knew them before their symptoms began. Disease changes people. However, if you met them after chronic illness was a part of their life, then you still have hope, I promise. 
        The number one most important thing to do is to listen. Listening does not mean just having them text you their issues. Listening means setting aside time in which you will have no distractions. This is best done face-to-face or over the phone (at the least). Listening also means focusing and caring. Actually, some of the most meaningful moments to me are when people call me to ask how I'm doing. People do not do that very often because let's face it, no one wants to listen to someone talk about something so depressing. But that is what makes it amazing. When someone calls you, it basically says "I am okay with taking the time out of my day to talk to you about something no one but you wants to talk about without any delayed response or needing to look up what to respond with like some robot". Listening is absolutely the best thing you can do to be a better friend. 
        A lot of the time, people end up giving you advice, which is very nice. At least for me, I really appreciate and value advice (from the right people) because it gives me another perspective on everything that is happening. But you have to be careful and mindful when giving advice to people. The major mistake people make is turning into a pediatric rheumatologist all of the sudden. You just needed someone to listen, and you end up gaining another "doctor". I understand if you agree with my doctor and not me. Everyone is entitled to their opinion. But with a chronic illness, it is easy to feel like everyone is against you. In some ways, everyone is. People dealing with a chronic illness just need someone to be on THEIR side. They already have enough people working against them, and they certainly don't need you stepping in and adding to the number. It is fine to state your opinion, but do not push it. While I definitely don't want anyone to lie and say that they agree with me if they don't, I don't want to hear that the person I'm talking to about my frustrations with doctors agrees with my doctor. It makes my point seem invalid and worthless. The best thing to do if you disagree with your friend is to just say, "I can see where you're coming from". However, so many people don't. 
        I feel like I just over-covered listening. But maybe listening is the kind of thing that deserves to be over-covered. 
        To be a better friend to someone with a chronic illness, you need to understand that you don't understand. No matter how many times someone talks to you and attempts to introduce you to their world, you are not going to get it. You will probably wonder how it is possible that a person could be so sad and so frustrated at the same things time and time again. But no matter how much, how well, or how thoroughly someone explains chronic pain and chronic illness to you, you will not be able to comprehend it. You can go home after talking to someone and concentrate on something else. It doesn't stick with you. But it sticks with us. We can't just wake up and not have to worry about it anymore. It does not leave when the tears are (temporarily) over. It lingers. Painfully. 
       When offering physical help or assistance to someone with a chronic illness, the best thing to do is to demand that you help. I know that sounds stupid, but it is so much better than asking. I've talked with my online support group about this too, and they agree. Saying, "Do you need help opening your water bottle?" is much worse than "I'm helping you open this water bottle." The latter makes it seem like you actually want to help. The former makes it seem like you feel obligated to ask. 
        Do not assume that a chronically sick person is just incapable of getting over their disease and moving on with their life. Chronic illnesses are always changing. One day it's the stress of going through a school and being yelled at for walking too slow, the next it's a condescending physical therapist, and then having to deal with the fact that you feel lonely. It is not the same thing all the time. Most of it is unspoken, too. There is no way I could ever tell anyone everything that is bothering me related to my arthritis in a given week, so I just pick and choose. You need to realize that the struggles of chronic illnesses are new every morning. Saying, "Pick yourself up and carry on," or something similar is offensive and irrelevant. 
        Allow your friend to be upset and be angry, because the worst thing you can do is tell someone to "calm down". Last time I checked, I DO NOT HAVE TO CALM DOWN IF I DO NOT WANT TO. That's that. 
       I would agree that chronic illness can cause a person to be more upset and stressed about the littlest things. You know when you bang your toe against something and it hurts really, REALLY badly and if anyone talks to you in the next few seconds you feel like throwing something at them or bursting into tears or just screaming? Or maybe you just feel like you hate everything? Well, think about feeling those seconds constantly. On top of that, you're tired, all the time, because you cannot sleep for the life of you. It's not an easy thing to put on a smile and not become upset. That's just the nature of pain. This is a very arguable statement, but I'm sticking with it.
       I hope this post is helpful and accurate in a broad sense and not just to me. I am more than willing to further discuss this post and its content with anyone, including my own personal friends if needed. In fact, I would be HAPPY to, because this post outlines everything that I find completely essential in being a good friend to someone sick, someone like me. Please, please, please do not give up on your friends when they are dealing with a chronic illness. Sticking around and willingly immersing yourself in the World Of Pain can make all the difference to a hurting person, especially a hurting kid. 

Love,
Rachel

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Feel free to comment or shoot me an email - thekidwitharthritis@gmail.com I'll try to get back to you either way!