Wednesday, July 30, 2014

Why Didn't I Think of That? Oh Wait, I Did!

This will not be one of my inspirational, make the world a better place one word at a time, for all those with chronic illnesses. It's going to be more of a venting type of blog.

I'm in 30 different chronic illness support groups for all my different chronic illnesses. I also have my Facebook page (also named very similarly as this blog, Healing Hopefully: Megan's Chronic Illness Journey, about my personal journey. I also have people in my life that I have face to face relationships with (or did until I moved away from them but we still stay in regular contact with each other, so they are very up to date on what is going on in my life). These people could be anywhere from friends, to ex-employers, to church members, to professors, to preceptors, to doctors, and on and on and on. I know a lot of my chronic illness warrior friends from the multiple support groups I am in, staying caught up as best I can while being extremely sick myself this summer and having to work on my thesis this summer as well. Basically, all I'm doing this summer is working on my thesis, sleeping, and going to appointments.

The overarching theme and pet peeve of people in every single support group that I am in for every single health condition I have no matter how long they've been on their chronic illness journey, or if they are brand new to the chronic illness world...The number one thing that is our biggest pet peeve is getting unsolicited advice from friends, family members, random people walking down the street, other doctors with different specialties that don't know about the other diseases you have and all the ins and outs of that particular disease, teachers, colleagues, and even other people with the same chronic illness that you have. This is also can apply to all you non-chronic illness people out there too. Perhaps for their parenting skills, or what job they should accept, or what decision they make for their family or their job or their education. About their spiritual and social groups. (However, this blog will obviously be leaning more close to the chronic illness end of the spectrum, since that is what this blog is about). Everyone get's unconsolidated advice, and everyone hates it!

Unsolicited advice is horrible and just makes people so incredibly upset because we should all be allowed to make our own decisions, especially if we are adults, maybe kids at certain ages too depending on the gravity of the choice they would be making. And so many times the unsolicited advice offered is by someone that has no idea about what they are offering their advice to you about. For example, someone who doesn't have children offering parenting advice to a mom. Or someone who doesn't have any sort of chronic illness, or at least doesn't have the one that is causing you issues right now and offers advice to make you feel better. It just doesn't work that way. Why would you offer advice to someone if you don't even have any experience with the issue at hand yourself. This is a little bit different if the question being asked could pertain to your career or degree and you may not have had personal experience with it, but you are educated about the subject. For example, I can offer multiple choices for what I would do for my feeding tube based on my personal and professional experience, but the people reading it should definitely take it to their medical teams, because I am not the health professional for any one in the groups.

This brings me to my next point. Advice can be welcome and appreciated when it is asked for. I will only comment advice on posts that specifically ask for advice. My number one pet peeve is when I post a statement on my status on Facebook or my Healing Hopefully page and I start getting advice and more advice and still more advice. I never asked for advice. I posted a statement, with a period at the end, not a question mark. There are times when I do ask for advice, But if I'm not asking for advice, please let me just vent through my status and take care of myself in the way that I know is correct for me to help me get out of whatever slump I'm in. This especially has happened to me the most with people that have the same chronic illnesses as me. They tell me well we do this, and have you tried that, and on and on. I remind people that I have top notch doctors taking care of me, we have protocols in place, and I'm a highly intelligent person so I don't necessarily need to change things right now. Which basically means, leave me the heck alone people...unless their is a question mark.

While we are on the subject of doctors taking care of our cases and protocols and making sure that we are being provided with the best possible care, that is the truth. It's not up to you, Suzie, Adam, Jane, or whoever else is on God's green earth that gets to decide how to "fix me". You don't have the right to give me advice on my condition or to tell me of some home remedy that you read about in some random magazine in the checkout line at Kroger that swears this home remedy will cure you of all ailments in the universe. You should not be able to suggest to me what new and different medicine that I should take because it works so well for you, it's just gotta work for me or to tell me to change my dosages of my meds because they work better at a higher or smaller amount. You have absolutely no right whatsoever to discuss my medical bills, that should be NO ONE'S business but mine! And my number one pet peeve, you should not tell me how to alter my diet to make me all better now. First of all, I'm on tube feeding, not much you can change about that. Second, I'm in school to be a dietitian, I'm pretty sure I know how to eat healthy, even better than your comment to me.It is so incredibly painful mentally and physically having to deal with these issues all the time: switching meds, switching diets, trying home remedies, fighting with insurance companies to get bills covered. It's a daily battle. Plus, if there were a home remedy that took away all the symptoms of everyone's chronic illness issues, don't ya think the whole chronic illness community would have jumped on that band wagon long, long ago. Do you really think we want to be laying around all day, unable to do things for ourselves. We want to be better. If there was a cure, we would have found it by now, because we have researched over and over and over again and tried everything with no luck. 

I hate it when people can't even spell the diseases you have, or text you to see how you spell that one thing that you have with the bendy joints, etc. And then you get emails or messages with all these articles that talk about how to manage your EDS and things like that. Or people think that you are letting your life waste away while you lay in bed all the time and if you just get up and exercise some or move around you will get better and be cured, or if you lose a couple extra pounds. Maybe you shouldn't be on so many medications, I bet the medications are just causing you to have more side effects and making you think you have more diseases than you actually have. Maybe if you changed your diet, did physical therapy, acupuncture, massage, and take some combination of herbs and supplements and do all this every single day or you won't get better. Doctor's think patients using Google is dangerous, I think patients friends using Google is even more dangerous. They find all this information and opinions about something they aren't even educated on and haven't even spoken to a doctor about. When, really, I've got everything under control. I know what I'm doing over here. 

In my opinion, living with a chronic illness and the lifestyle it brings with it, is the worst part. Our country is so judgmental of anything that is different from the way we are "supposed to be living", different from having your dream job, and a husband (or a wife), with a house on a cul-de-sac with 2 stories, 2-3 kids, a couple of dogs and cats for pets and no worries in the world besides buying school supplies...not scheduling 6 doctors appointments a week and things like that.

No one can accept that those of us who have chronic illnesses, would really rather have the above mentioned character traits instead of living the life of a chronically ill people. Please don't offer your opinion on my lifestyle situation and how I have to make ends meet, when you have no idea how debilitated I actually am. We may "get" to lay in bed all day, but when you're over a year in it gets kind of majorly suckish, I mean even after 2 months I was going batty, we may not have to do certain things because of our disability like vacuuming or cooking, etc., but the disability is worse, trust me. Often we can never get anywhere outside of our appointments and obligations and then it's immediately back to bed. Also, a lot of people think that is unfair because we get "paid" to do no work at all if we are on disability. But most of us would rather be back at work, working full time, fulfilling the purpose of our lives. Plus, I don't know if you've ever had or seen a disability check, but there ain't no living on it. That's why I can't move out of mom's house. It would be impossible. I would almost kill to be able to go back to work again. Tomorrow. If I could. Long, long hours. Having the time of my life. Making a difference in the world. And making a decent wage. 

So if after reading all this you still want to pass judgement on people with chronic illnesses and think they are over exaggerating and attention seeking and not really as sick as they say they are and want to give them unsolicited advice, boy have I got a solution for you.

If after 24 hours of feeling exactly how I feel every day, being hooked up to a feeding tube, having a port accessed, all my symptoms going on in you for the entire 24 hours you still have an opinion that you want to tell me of how to live MY life with MY chronic illnesses then you're not so bright. Because I bet during those 24 hours you will do what we do our whole lives which is look for information all over the place about how to make our suffering just a little bit better. 

And when you start looking for information to make you feel better during the 24 hours, you will realize there is no cure or treatment or home remedy or complementary alternative medicine type that will make it all go away. 

And then you will realize why we get so mad when we get offered unsolicited advice on our conditions that we know more about than most of our doctors even do. If there is any smidgen of information out there that claims that this treatment may have provided some sort of relief somewhere down the line, we've tried it, and we've tried it again. We have thought of every possible solution on the face of the planet. So when you offer us advice...odds are we've tried it and thrown it out the window hard and fast, or tried it and are currently using it. So anything you can through our way has already been experimented with, and I already thought about it. 

So if there is a period after my ranting on Facebook or twitter or whatever, do not give me advice, I did not ask for it. If there is a question mark, respond with your own risk. :) 


  1. Preach, Megan! I'm with you 100% on this!

    1. Thanks, Catherine!!! I think people giving us advice for nothing they even have ever heard of before is absolutely incredulous. And stupid. And rude.