Why people feel the need to give advice
If you are someone who has given me advice, please read the entire entry before you jump to the conclusion that I am criticizing you. That is not my intention, I'm just trying to foster some understanding.
Since I started exhibiting symptoms about 2 years ago, I have been getting advice. Try [insert supplement here] or try [insert fad] diet! Eliminate [insert allergy food] from your diet. Yes, I am aware of how silly those sentences look, but I've been advised to try a great many things. And if I did every single one of them I would be eating and drinking nothing but water and lettuce and taking enough supplements to poison myself. For months before I went to the doctor I looked into different things to try and tried a few. In the beginning, the advice was more readily accepted. My pain level finally got so bad (even with up to 4 Aleve) that hubby insisted I go to the damn doctor. I did, and was told it might be RA and was given Celebrex. When I announced this, I received more advice. And lots of advice geared at figuring out what else it could be besides RA even though my doctor had ruled out other things. (I'm not a huge fan of doctors. I've had issues with them. But when they've run every test under the sun and listened to everything you have to say, I tend to trust them. I DO actually have a decent doctor.)
I don't want people to think I just blew them off, I didn't and don't. I looked up (and look up) every single bit of advice I was given. Research, studies, blogs, etc. Some of the stuff had no evidence whatsoever to support that it actually worked and I threw it out right away, some things showed some promise and I did more digging. Vitamin D it turned out, is great at helping with muscle aches and I regularly take it. Certain acidic foods aggravate symptoms and are good to avoid. Other foods are good to avoid because Celebrex irritates the stomach and they can make it worse. Some things are just good for your health overall like watching your intake of junk and processed food, whether they affect RA or not. As time went on I finally got a definitive diagnosis of RA after 2 more rounds of testing, my dose of Celebrex was upped and I had to add painkillers. And I got more advice, still mostly geared at making it go away because it is likely caused by [insert cause].
A little advice is good and can be helpful. And people do mean well, they want you to get better. I know this. But after awhile it just becomes tiresome. Especially as time goes by and you don't get better. I love advice from others with the disease, they are living it and know what they are talking about. And I'm likely to really want to try something they say has helped them. But for people who do not have it to keep dispensing advice after 2 years, it just wears on you. Do they think I have been sitting here, twiddling my thumbs, following all my doctors advice like a sheep and not doing any research of my own? If there were a magic thing that could cure me, I would do it. I'm not a masochist. In my frustration I decided to put some real thought into why people give their advice. The conclusion I came to was that I don't think people really get what I have. They get stuck on the arthritis part of RA and their recommendations reflect that.
There are things that we eat, drink, and are exposed to that contribute to certain illnesses. So, people hear and read and experience things that they feel are helpful and want to share them. But they do not take the time to think about whether or not their advice is actually helpful to those they are sharing it with. If you are putting it on FB or your blog, then you are just sharing it with the world and people can take it or leave it. That's great. There may be someone out there with a condition that will be helped by your advice. But if you are directing your comments directly at a specific person, in this case, me, then you need to think about whether it will help me. One example: Despite the fact that everything I have ever read says Glucosamine and chondroitin shows no effect on RA in studies, people still advised over and over that I take it. (Why? Because it shows promise for people with osteoarthritis.)So I did for a year with no effect before I quit and threw it away. I have a diagnosis of RA. So, if you find out about something that may help with RA specifically- great! Just today my mom was telling me she spoke with someone who has a family member with RA. I was interested in what she had to say because this is actual experience. If that person with RA sent me a message themselves, I would be even more likely to try it. But having healthy people who have no first hand knowledge of RA, who don't seem to get it, throwing advice your way all the time... it wears on you. And a friend of a friend of a friend's cousin who took some supplement is not first hand knowledge. My main point here? Find out about RA. Find out what it does. Read blogs by people with RA. Ask the person about their symptoms, if you think it might be something else. If the symptoms really do fit something else (and not just in a vague one symptom kind of way) share what you've read. But if you don't really understand, and you don't know that your advice has anything at all to do with RA, then you should probably keep it to yourself.
Imagine that you just got run over by a car (but survived of course and it's not going to kill you). You hurt all over pretty badly. Now, as you are laying there in misery, imagine a healthy person strolls up and whispers in your ear all the things they think will help you. What do you want to do to that person right now?? If you don't get what this analogy has to do with RA, then you don't understand RA.
Since I started exhibiting symptoms about 2 years ago, I have been getting advice. Try [insert supplement here] or try [insert fad] diet! Eliminate [insert allergy food] from your diet. Yes, I am aware of how silly those sentences look, but I've been advised to try a great many things. And if I did every single one of them I would be eating and drinking nothing but water and lettuce and taking enough supplements to poison myself. For months before I went to the doctor I looked into different things to try and tried a few. In the beginning, the advice was more readily accepted. My pain level finally got so bad (even with up to 4 Aleve) that hubby insisted I go to the damn doctor. I did, and was told it might be RA and was given Celebrex. When I announced this, I received more advice. And lots of advice geared at figuring out what else it could be besides RA even though my doctor had ruled out other things. (I'm not a huge fan of doctors. I've had issues with them. But when they've run every test under the sun and listened to everything you have to say, I tend to trust them. I DO actually have a decent doctor.)
I don't want people to think I just blew them off, I didn't and don't. I looked up (and look up) every single bit of advice I was given. Research, studies, blogs, etc. Some of the stuff had no evidence whatsoever to support that it actually worked and I threw it out right away, some things showed some promise and I did more digging. Vitamin D it turned out, is great at helping with muscle aches and I regularly take it. Certain acidic foods aggravate symptoms and are good to avoid. Other foods are good to avoid because Celebrex irritates the stomach and they can make it worse. Some things are just good for your health overall like watching your intake of junk and processed food, whether they affect RA or not. As time went on I finally got a definitive diagnosis of RA after 2 more rounds of testing, my dose of Celebrex was upped and I had to add painkillers. And I got more advice, still mostly geared at making it go away because it is likely caused by [insert cause].
A little advice is good and can be helpful. And people do mean well, they want you to get better. I know this. But after awhile it just becomes tiresome. Especially as time goes by and you don't get better. I love advice from others with the disease, they are living it and know what they are talking about. And I'm likely to really want to try something they say has helped them. But for people who do not have it to keep dispensing advice after 2 years, it just wears on you. Do they think I have been sitting here, twiddling my thumbs, following all my doctors advice like a sheep and not doing any research of my own? If there were a magic thing that could cure me, I would do it. I'm not a masochist. In my frustration I decided to put some real thought into why people give their advice. The conclusion I came to was that I don't think people really get what I have. They get stuck on the arthritis part of RA and their recommendations reflect that.
There are things that we eat, drink, and are exposed to that contribute to certain illnesses. So, people hear and read and experience things that they feel are helpful and want to share them. But they do not take the time to think about whether or not their advice is actually helpful to those they are sharing it with. If you are putting it on FB or your blog, then you are just sharing it with the world and people can take it or leave it. That's great. There may be someone out there with a condition that will be helped by your advice. But if you are directing your comments directly at a specific person, in this case, me, then you need to think about whether it will help me. One example: Despite the fact that everything I have ever read says Glucosamine and chondroitin shows no effect on RA in studies, people still advised over and over that I take it. (Why? Because it shows promise for people with osteoarthritis.)So I did for a year with no effect before I quit and threw it away. I have a diagnosis of RA. So, if you find out about something that may help with RA specifically- great! Just today my mom was telling me she spoke with someone who has a family member with RA. I was interested in what she had to say because this is actual experience. If that person with RA sent me a message themselves, I would be even more likely to try it. But having healthy people who have no first hand knowledge of RA, who don't seem to get it, throwing advice your way all the time... it wears on you. And a friend of a friend of a friend's cousin who took some supplement is not first hand knowledge. My main point here? Find out about RA. Find out what it does. Read blogs by people with RA. Ask the person about their symptoms, if you think it might be something else. If the symptoms really do fit something else (and not just in a vague one symptom kind of way) share what you've read. But if you don't really understand, and you don't know that your advice has anything at all to do with RA, then you should probably keep it to yourself.
Imagine that you just got run over by a car (but survived of course and it's not going to kill you). You hurt all over pretty badly. Now, as you are laying there in misery, imagine a healthy person strolls up and whispers in your ear all the things they think will help you. What do you want to do to that person right now?? If you don't get what this analogy has to do with RA, then you don't understand RA.
Replies
Lisa
Well said! After being diagnosed for 2 years with RA and now going to a Neurologist to look for other nerve disorders, my MIL told me on Easter that I probably just have a parasite like Dr. Oz\'s wife.
If I can get them to kill the parasite, I will be all better.
Poof... if it was just that easy.
Take Care,
Kim
Parasite is one I haven\'t heard yet. If it were only that simple.