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

Tuesday, March 12, 2013

Two Year Blogiversary

*Pre-written a few days ago, but today is my actual blogiversary.

     I swore I wouldn't miss this blogiversary...and I didn't! As of today, March 12th, 2013, this blog has been up-and-running for two whole years. That is crazy to think about, because I remember picking the name and web address and everything! (Quick Fact: This blog was originally titled "Living with JIA" and had a different web address but I changed it almost immediately after creating it because I liked "The Kid With Arthritis" much better.)
     I would like to use this post to say thank you to everyone who reads this blog. It really means a lot to me that you take a couple of minutes (or more than a couple...my posts tend to be really long haha) to hear what I have to say. Of all the things you could choose to read, blogs and articles that contain more wisdom than mine ever will, you still read about the life and challenges of a 13-year-old from a pretty normal town with nothing spectacular about her dealing with a pretty tough disease.
     My blog started off fairly small, with not too much activity, but has quickly blown up, especially in the past year. I've gotten more page views than I ever thought I would and so many emails that I can barely keep up! I am so grateful for all of the relationships this blog has allowed me to form. I am thankful for your emails and love and prayers and constant support.
      I am thankful for the support and publicity provided to me by other bloggers as well as the Arthritis Foundation. This blog has made managing arthritis much, much easier and has allowed me to see the best of chronic illness as well as the worst.
      It is so honoring when I see that someone has shared my blog with others. I don't think that you all will ever know how much that means to me. I hope that I am using this blog in the best and most effective way possible. As always, I am still open to suggestions for posts, outline information, tips on blogging, and etc. I've learned a lot about the blogosphere but I still have a long way to go. I also LOVE getting your emails! Keep them coming...it can take me quite a few days to respond, especially during a flare, but I promise to always get around to it! Click here to send me an email.
      Two years and 83 posts later from the day I clicked "publish" on my first blog entry, I'm still writing away. Thank you for everything!!!

Love,
Rachel

Tuesday, March 5, 2013

Superhero

     I have honestly decided that I am going to be a superhero. This could be the stupidest thing that I've ever done, but hey, why not at least give it a try. I am refusing to give up on the small things and I will not let go of my detail-oriented tendencies. I am going to be me without arthritis, except with arthritis. It sounds stupid, but it needs to happen. I'm tired of being me with arthritis.
      I will manage my schedule like a pro. I will not fatigue, even pumped full of methotrexate on Saturday nights and Sundays. I am going to be a superhero. I will not live like a parasite, accepting the help of others because my body is not good enough on my own.
       My new water therapist and her student were not so impressed with my knees at my last appointment on Friday. I really underestimated how hard it was going to be to walk back in forth in the water, and my knee had been killing me all day. Physical therapy is a process that makes me feel completely picked over. "Do you always turn your feet inwards when you walk?" the student asked me.
       "I don't know," I answered honestly, "My last physical therapist mentioned that too."
       "Try to keep your hips and back straight, you're compensating for your right knee."
       "I'm trying," I pleaded.
       "Is that knee really hurting you today?" Bingo!!!!!! We finally had some understanding. I don't know for the life of me why I didn't tell her that it was hurting in the first place. I did that with my last physical therapist too, where I would just barely talk and answer all of her questions with 'yes' or 'no'. She would keep on pushing me and challenging me because she thought I wasn't experiencing too much pain and then I would just break and end up in too much pain and tears to continue on. Anyway, the student in the pool stretched my knee, and I was told that my muscles are tight for about the 800th time in my life. She also said that my knee felt a little swollen. Luckily, she changed the therapy for the day so that it wouldn't add extra pressure or pain to my knee. I had another physical therapy appointment Monday and a doctor's appointment today which I won't even go into.
         At my water therapy appointment, I also discovered that the PT student watches The Bachelor. I cannot even tell you how much I love and appreciate that quality show as well as anyone who watches it. I've gotten to the point where I'll ask my teachers if they watch The Bachelor. It is becoming a problem.
         One of the things I don't like about using accommodations is that I feel like I am just covering up the problem. Nothing is being fixed and my joints aren't being helped. I am only compensating for everything I can't do. But I don't want the world to change. I want everything to stay the same and me to change. Accepting accommodations, and really help in general, makes me feel like I am giving up.
         I hate stairs with a passion. I give thanks every day that there is an elevator in my school and I possess the key. Stairs are the WORST. I hate them because they hurt, but other than that I actually like taking the stairs. If my arthritis isn't flaring too much at school I will gladly go up the stairs instead (though that doesn't happen often). Per usual, my whiny self hates being different. This ties right in with me wanting my joints to change and not the world. I don't want other people to work harder or take precious time out of their days. I feel like my joints should just get better and be independent. And I don't know how not to feel that, if it is indeed a somewhat destructive feeling as many say it is. Am I not supposed to want my joints to get better? I always will.
         I've seen a lot of doctors and therapist lately, as you've probably already realized from this post. One of the things I hate about doctors is their complete inability to put two and two together. Say a disease has symptoms that are A, B, C, and D. Now say a patient has A, B, and D. Just because we they are missing C doesn't mean that they cannot have the disease, especially with autoimmune diseases. Most of autoimmune diseases is still a mystery. Therefore we cannot rule out something so unknown by little tests that don't give us concrete results.
         Actually, I hate it when people in general are unable to put two and two together. When you are trying to find a reason for something, you have to figure out what everything ties back to. Doesn't there have to be a reason for everything? I don't really believe in weird chances and coincidences and things like that. So if there has to be a reason, you have to find a common factor. And that is NOT the hardest thing in the world.
          This week, I am especially thankful for having a teacher who understands autoimmune disease. However, I would rather this person not understand at all. I would much rather have an ignorant, rude teacher than a teacher who has to deal with an autoimmune disease. I just don't want anyone to have to feel pain.
           I just want [us] to be okay, be okay, be okay. I just want [us] to be okay today.

Love,
Rachel