Have you ever heard this? From family members? From doctors? From well-meaning coworkers? It doesn’t necessarily have to be about RA (or autoimmune disorders in general) but can really be about just about anything. In my case it is about RA. My son, it it about Sjogrens.
Yeah, yeah, I have to admit, I was guilty of it myself. Back four years ago when I was looking at getting diagnosed (after it had been active disease for two years already) it thought the same thing. I’m too young for this! NO… no no no… Of course I thought the same thing when I was told it was time to wear bifocals, too. And when I realized I am the mommy… and that I’m the mommy of kids that I feel younger than. BUT since I still listen to kids’ music (Raffi, Disney, Kids’ Place Live) it is kind of a wash.
When I heard the news “You have Rheumatoid Arthritis. You need to make an appointment with a Rheumatologist as soon as possible” I freaked. I remember the women’s house we used to visit when I was little. She was a friend of the family. She was incredibly thin and impossibly old (please, I was five). I was scared to death of her because her fingers were… RA fingers. None of them quite went in the “right” direction. All of them were bent and gnarled, all of her knuckles had nodules and were swelled and deformed. It was a vivid memory and when I realized that I had RA, I went on a google search.
I was 44. I wasn’t old enough to have RA. I was (am) gainfully employed. I am a writer and I am in IT. My fingers on a keyboard are my life. How could I possibly be her!?!
I was just as bad as everyone that unsettles me, now. I made assumptions. Assumptions are very bad things to make.
Here I am four years down the rabbit trail learning more every day and realizing just how much people don’t know. Not just about RA, but even about osteoarthritis and about Sjogrens and about epilepsy and other conditions that just happen to have been around for centuries!
Jump forward four years to my son working through the diagnosis of sero-negative RA. And a shredded nerve in his knee and significant osteoarthritis in both of his knees. He’s 21. He’s too young (statistically) for significant osteo in his knees. But statistics only work in math. They don’t really work so much in real life. He is much more stoic and much more realistic that I am in a lot of ways. He took the diagnosis and ran with it. He went to the internet and found out the facts then he fit the facts to his life. He takes a couple OTC NSAIDs when his knees act up and he gets on with being 21.
I have, since my diagnosis, realized many things.
My RA isn’t like pretty much anyone else’s RA. It’s my own. It is my own knuckles and toes, ankles and wrists and knees. How I feel isn’t how the lady in the TV commercials feels. What I can do isn’t what some other people can do. It isn’t for me to judge anyone else. I know that there are many people who are fighting a fight very similar to mine who are very young. Some are not yet even able to tell the people in their lives that they hurt, let alone understand that what they feel isn’t the way they are supposed to feel (life isn’t supposed to hurt). I cannot change the path that they are on, but I can try to pave the way to try to help their walk through this world easier.
My RA today isn’t my RA last week, last year, or next year. I have worked my way through two biologics that worked for a while and quit. Now, I’m on Orencia and I actually look forward to being tied to an IV once a month. I am enjoying talking to the ICU nurse that gives me my infusion. I’m enjoying feeling way more human again. Is this the be-all-and-end-all solution? Probably not. It’s an evolution. I will probably work my way through this one and end up on yet another medication.
I need to be gentle with myself and with other people. The “be gentle with myself” part of it is kind of obvious. I have to listen to my body and try to not over stress it. Give it the rest it needs and feed it good food. But I know I need to be gentle with other people, too. I can chose to get angry with people who make stupid comments about how I should be treating myself; about how I should be feeling; about how other people feel; about the fact that I should feel lucky because I’m not as bad off as other people, or how I should just apply myself more so I can be as good as other people. If I get upset, It makes my body upset. So being gentle with other people, in effect, is being gentle with myself. I can’t make other people understand. I can try to explain to them, and I often do, but I can’t make them understand or accept or believe or anything. We are all masters of our own minds.
I can also point out that 21 is not too young so 48 is also not too young. People spend entirely too much of their lives judging. It doesn’t help anyone when that happens.
OH, yeah, and I can be the font of supportive knowledge!!! I have had the good fortune (I guess that kind of depends on how you look on it, and on which side of the conversation you are on) to have been able to provide information and support to people who were fearfully facing what I faced… the dreaded diagnosis. I have been able to give support, and information on things that work for me on really bad days. And if I can give just one person someone to walk down the path with, to talk to, to laugh with and cry with, then I maybe have done what I can to make their walk easier. And I can use my words to help others who can’t find their own.
If I hadn’t dealt with what I’ve dealt with and I hadn’t seen what I’ve seen, I wouldn’t be able to help the people that I have tried to help.
Am I too young for this? Well, Yeah. I’m too young in my head to be who I am most of the time. But is my body too young to be going through this? OBVIOUSLY not! It is my reality.
I finally had to tell my sister to stop saying “But, you’re so young!” after she said to to me about my RA, my other sister about her epilepsy, and my close friend about a lupus diagnosis. Obviously, she’s trying to be supportive & is dealing with shocking news, but it’s not the right thing to say.
I’ve had countless other people say variations of “But you’re so young!”, “At least it’s not cancer,” “You’ll just have to learn to live with it,” “I have that in my shoulder,” and “Oh, yeah, I know someone with that and their doing fine.” Super.
Isn’t it awesome? I mean, I honestly didn’t realize all of the people that had the same thing (or very similar) that I have that I worked with. RA, or some variation. And they are all too young! It was awesome. We discussed many different things. Most of them have moved on to other job opportunities, but it was really great to have a supportive team around at work! Sometimes just to bitch in the ladies room to! 🙂
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This is a great post…I honestly think people don’t realize how their words affect us…and I’m sure I’ve been guilty of doing the same thing in other situations…so I try not to get upset when people attempt to tell me how I should feel…just shrug it off, if possible…and I know it’s not always possible.
The words that I hear directed at me might hurt. Similar words directed at my kids (Gotta love the hereditary part of this adventure) stab to my heart. 21 is too young, but it apparently isn’t too young. even though when you’re the mom… they are always going to be your babies. It is then that the words hurt the worst.