To Share or Not To Share... That is the question

I've had an RA diagnosis (Dx) for about a month now. I just started sharing the news with family. It took me a long while to think about how I wanted to share it, with who and what to say. And I wanted some time to pass for me to process it before taking on the reaction of others.

To share something like a medical diagnosis with others feels vulnerable to me. It means I may have to hear their thoughts, reactions and suggestions about what I'm personally going through. It also feels like I'm vulnerable to judgement.

Like a lot of people with chronic illness I feel like other people, even people who love me, might think I'm making it up, or it's all in my head, or I'm just looking for something to be wrong with me or that I'm a medical attention seeking hypochondriac. I don't know where I get those messages from, because no one has ever accused me of any of that before. But there you go... the fear of that message is there and I'm sure I'm not alone in feeling that way.

Here's the ideal way I'd love someone to react when I tell them about the RA Dx:

• What did your doctor (or rheumatologist) say about it?
• Are you taking any medication?
• Are you going through side effects? 
• WOW! How can I help you?
• That must be so hard for you, I'm really sorry to hear that.
• I'm here for you if you just need to talk about it and want support.

That said, my husband is amazing and did all this and more.
But what tends to happen (again, I'm sure I'm not alone in this experience) is the following:

• That sucks! Have you tried (weight loss, exercise, herbal supplement, fad diet, acupuncture, weed, etc...)
• My aunt has that too, do you want her phone number so she can tell you all about it?
• I have "arthritis" too.
• "You sure have a lot of health problems" (real talk: what my Aunt said to me when I told her.)
• Will it go away or will you have to be on drugs for forever?
• You're lucky, I'm sure it was caught early
• AND THE EVER FAMOUS RESPONSE: "YOU'RE TOO YOUNG TO HAVE THAT!?"

That last one will make me madder faster than any of the others. And it's also one of the reasons I hate seeing pictures of very advanced seniors for anything having to do with RA (which is everywhere all the time.) It just feeds into this myth that it's an "old people disease" or the same thing as OA. ARGH!!!!

Disclosure of something that affects my life in every way is not easy to do. I need to remember that what people do and how they react is out of my control. Providing them with information gives them the opportunity to be supportive and helpful. I know I get a lot of pleasure out of helping other people. So it's useful to look at it as giving people an opportunity to respond in a helpful way back to me.

When I do share with others I like to provide them with this link from the Mayo Clinic. It's a reliable information source that's an easy to understand overview. Then I tell them that they can ask me questions anytime.

A lot of my limitations come from the medication and less from the RA. So I share some of those side effects too (like having to keep out of the sun, being tired easy, etc...) I also make sure they know how easily I can get sick, that way they know to keep away from me if they have something (or at least to let me know so I can cancel plans if I need to.)

Having a brand new job I haven't told my employer yet. But my job isn't physically demanding at all (thank God!) If something comes up that's a limitation for me I don't mind advocating for myself. It's in a personal, intimate relationship that I find it more challenging to discuss.

Seriously? "Reduce Stress!?"

The #1 advice I read over and over again is "reduce your stress." These articles/books/blogs will often go to on suggest "take deep breaths" or "go for a walk." Now I'm not saying these things don't work, or that it's a great idea to try and keep stress down. But you know... life happens! Like this gem I encountered today.

Are you serious?

I spent an hour on a major company website filling out a detailed application only to have it eaten and vanish when I hit submit. That's real life stress right there. Not to mention I'm having to job hunt again after only being employed for barely a month. But I'm supposed to just not let it get to me and go for a walk?

Well, it's no surprise that I woke up to a bit of a flare this morning. I also was really busy this weekend. And despite my husband making me take breaks, I still managed to do too much. My hands hurt and were stiff. The worst since starting the Plaquenil. I was thirsty all night and just felt sore this morning. Oh! My face is also breaking out. Yeah that's the face of stress.

But back to job hunting for a second. 

This is a standard question all employers ask. I never thought much of it before today. (click on it to see it larger if you don't read chicken scratch.)

So I ended up checking "no" because the descriptive words they used were things like "substantially limits a major life activity." And frankly also because it's not their business. So far I can work around all of my needs just fine. If I required some ADA services or major accommodations that I couldn't provide for myself I might have checked "yes."

I really hate that employers expect you to disclose something so deep and personal in such a way. In fact, I think it's really awful. And there's the "s" word again, right? "What if I mark yes? Will they not hire me because I said I have a disability? If I mark no and later need accommodations will they fire me for not disclosing sooner?" These are real life concerns.

Another reason I marked "no" is that I'm still figuring all this out. Until I know 100% what's going on I don't think my employer needs to know. 

So yes, I try my best to keep stress at a minimum, but some days I'm more successful than others. And after 2 hours on a cruddy website I was rewarded with this alert.

YAY! PICK ME! PICK ME!

I've applied for 5 jobs this morning and I feel good about them. I'm hoping something will come through soon. Now excuse me while I go eat some breakfast (food always lowers my stress.)