When Do I Talk? What Do I Tell?

Last updated: November 2018

Having a lifelong illness comes with a ton of unique trials and tribulations.  There are things that we experience that most people will never understand – couldn’t understand – without going through it themselves.  Soldiers who return from war say it’s difficult to explain what they experienced to anyone who wasn’t there.  Well, autoimmune illness and RA may be our own private little war, but in much the same way, if you haven’t been through it, it’s almost impossible to explain. 

So how much do you tell people, and when?

I’ve been in so many situations where I wished I had shared more of my disease with someone else, and I’ve also been in many situations where the reverse was true.  Then there’s everything in between – telling someone a part of the story, but not the whole thing.  I can’t tell you if it’s right or wrong, but I will share some of the things I’ve discovered in thirty plus years of RA.

I have to say that drawing from my own experience, you should probably keep it light and keep it short during any first meeting.  I can’t tell you how many times I’ve made this mistake myself, especially when you meet someone you really enjoy spending time with.  The immediate response is to share and share alike, and I get it, I really do.  Who doesn’t want to be with or be friends with someone they can be completely honest with?  Here’s the thing, though, when you drop the entirety of autoimmune illness and all its consequences into someone’s lap, they can get easily overwhelmed.  Think about it like this.  You go to a restaurant that you think you’ll like for the first time, and when you get the menu it has every dish you’ve ever heard of.  The menu is so big that you don’t even know where to start.  You’re totally overwhelmed.  So, what do you do?  You stick to what you know and don’t take a risk and try something new.  It’s the same if you tell someone you just met what having RA really means – they will most definitely get overwhelmed, and the more you explain the more confused they’ll get.  So, what do they do?  They decide it’s too much to try something new (like you) and go back to their comfort zone.

Telling people about RA: slowly

One way to assure this doesn’t happen is to parse out the information slowly, over a longer period of time.  Now, I’m not saying to lie or hide your illness – that will lead to disaster for sure.  Even if you were able to conceal your ailment long enough for, say, a significant other to fall in love with you, then what have you really gained?  Now you have someone who may feel like they’ve been trapped or duped, and that’s certainly not a great foundation to build a relationship on.  A much better way to deal with anyone you meet, friend, potential romantic partner, or otherwise, is to work it into conversation that you have RA, and don’t linger too long.  If they ask what RA is, just tell them it makes your joints hurt sometimes, or something similar.  I know this may feel dishonest, but trust me, you are going to have so much time to reveal the full scope of your illness that you really don’t have to hand over Rand McNally’s Pocket Guide To Your Arthritis to everyone you meet for the first time.  Let it come organically, and you’ll have a much better outcome, I promise.


The above applies to just about every situation I can imagine when meeting someone new, or someone who doesn’t know about your illness.  There is one situation, however, where I do not think that honesty is the best policy.  It’s time for some real talk, and I’m going to preface this part by saying that I feel awful putting it to paper, and I want to take a shower just for writing it, but it’s important that you hear it.  The simple fact is that most employers in this country still don’t want to hire or keep on staff someone who is disabled or someone who has a chronic illness.  Sure, there are some good eggs out there, but in my experience there’s many more bad eggs.  It’s not as if I don’t have experience, either.  I’ve worked at least twenty different jobs in my life, across a multitude of industries.  They all had one thing in common – they don’t take kindly to absences.

I know some of you are saying “but it’s against the law to fire someone for being disabled!”  Yes, that’s 100% technically true.  Unfortunately, it is legal to fire someone for pretty much anything else, especially in New York.  What I’m saying is, if they want you gone, you’re gone.  This is why if you walk into the job interview and immediately lay it on thick – telling them that you have a chronic illness, and that you will have to frequently take time off with little or no warning, and you will also need several days a month for doctor’s visits, then your application will have its own appointment – with the trash.  It’s happened to me.  I was even told once that I don’t conform to the store’s brand.  I stupidly thought it wouldn’t make a difference if RA was on my application.  So trust me, try to avoid it in the interview.  If they ask you, of course, don’t lie, but reassure them it won’t interfere with your work.

I wish the world wasn’t the way it is, and I wish that we didn’t have to play down our illnesses, but a wish and a dollar fifty will get you a cup of coffee.  I’m in no way saying don’t be proud of who you are, or what you are for that matter, but remember – you are more than RA or Crhon’s or whatever autoimmune illness you have.  Don’t ever be ashamed of yourself for it, but just remember, people can get easily overwhelmed.  I’ve found, though, if you play things right, it won’t ever matter.

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