Tips For Sharing Your Illness - Vol. 1
One of the biggest issues I hear from people who have RA is that others don’t seem to understand the disease. It goes without saying that there isn’t much out there about RA, but there is also another problem – the disease is as crippling mentally as it is physically. Here are a few ways I’ve discovered that may help you share your illness with others without making them feel sorry for you or feel miserable themselves. A lot of the steps may not be what you expect, but they are tried and true methods, I promise.
It starts with you.
First and foremost the most difficult step. It doesn’t involve anyone else at all but you. You have to take a long hard look in the mirror and be honest with yourself. I mean, think about it. If you don’t know who you are and what you’re really capable of, how are you going share that same info with someone else? Years ago, in ancient Greece, people would head to the Temple of Apollo at Delphi to see the oracle, who would tell them about their lives and sometimes even foretell the future. On the walls of the temple was a simple phrase “know thyself.” This was because the oracle knew that most people tell themselves lies, and when they came to the oracle who could see the truth they would be shocked and appalled. It’s a similar situation here, if you are lying to yourself about what you can do and what your limits really are, be it overcompensating or undervaluing (most people undervalue), then you are going to be shocked at the way people treat you. You know you know – deep down – the things you can and cannot do. You need to accept that you are you and lying to yourself isn’t going to change that. No one can do more than they can do, healthy or otherwise, so don’t fall into the trap of telling yourself that you can. It will make sharing things with other people infinitely more difficult. Like I said, this is probably the hardest part of the whole endeavor and is why many people just decide to shut themselves off from the world. I did it for a handful of years when I was at my worst, and I know how lonely it was. You definitely don’t want to end up where I was, with Mama Celeste and the Gorton’s Fisherman my only friends.
Sharing about your RA with the right people
Second, you must trust yourself that you’ve chosen the right people to share your illness with. You know your friends, and you certainly know your family. You know which ones are going to be empathetic and genuinely care about what you are saying, and you know which ones are going to say, “cool story, bro,” and go back to watching football. I’d recommend not starting with the latter. That’s not to say that some are less than others, we’re all unique and everyone has different assets, and everyone has different liabilities. It’s just if you are going to bare your soul to someone you want to increase the chances that the first few times are going to be a positive experience. It will help to build your confidence and it will teach you the things that do and don’t work. I am a big believer in the “practice makes perfect” school of thought, and I know for a fact that people can get better at anything done time and time again. I myself used to hate public speaking. Just the thought of it would give me knots in my stomach the size of small goats (also I ate a goat beforehand). Now though, after years of leading seminars and speaking at expos and conferences, I barely get butterflies. Why? Practice. Makes. Perfect. So, find the person who you think will be the most receptive and unload baby.
Too much information.
Third, try not to overwhelm whoever you are speaking to. I know this may sound like I’m saying your illness is too much for someone to handle, but that’s not it. I can tell you from years of writing and speaking that people tune out very easily, especially in this day and age. It doesn’t matter if you are talking about whiskey, widgets or witches in Harry Potter, if you give people too much information at once or get too far into the weeds, they will tune out. You parents out there will know exactly what I’m talking about.
Parent: “We both want to know did you clean your room and walk the dog and take out the trash and put it in the third can with the lid on? Oh and do your homework.”
Child: “Yes. No. What's correct? My arm fell off.”
The two conversation killers: TMI and ITW. Too much information and into the weeds. You want to get your point across quick and simply and give the person you are talking to time to digest what you are saying. The same way you wouldn’t keep shoving food into your guest’s mouth even though it was obviously full. Or at all. Unless you were my grandma, who seemed to take pleasure from trying to fatten me up like Hansel and Gretel for Witch’s Thanksgiving. Also, you can’t go too far into the clinical details of your illness. I can pretty much guarantee none of your friends wants to know exactly how tumor necrosis factor plays a part in the inflammation and irritation of synovial fluid, which leads to cartilage and bone deterioration on a.. scale…. Zzzzz.. zzzzz ..zzz. I just fell asleep for a second writing that. Now imagine someone hearing it from you while staring over your shoulder at the coffee cake they are just waiting to inhale after you shut up for a second and they can fake having to go to the bathroom. That dog won’t hunt monsignor. You want to keep the details above the “need a phD to understand what the f*&! you’re talking about” level. Besides, think about it, your friends and family don’t really want to know the mechanism of action of your illness, they just want to know how you’re feeling and how they can make it better. That’s what friends and family do, so don’t bog them down with so many details that you have to draw a Venn diagram to explain it. Ugh, so many circles.
I've learned a lot over time.
There are a lot of other things I’ve learned in my years dealing with this illness and sharing it with others. We can get into some of the more complicated and difficult to handle social aspects in volume two, but this guide should give you some of the tools you need to start to share your life with others. It’s going to be scary and unfamiliar the first time, but remember, practice does make perfect. Trust me, if I can learn how to make people laugh when discussing the ridiculous things that happen to me, then you can take a small step and share some of your illness with another person.
How often you do experience an unexpected boost of energy?