How much to share?

We have bad days and good days.  Some of us only have bad.  No news is bad news with rheumatoid.  If we aren’t feeling well or had a test result that wasn’t good, you may not hear from us.  Does this keeping to ourselves give the wrong impression to some?  I think it may as many view no news as good news.  Sure, if your doctor doesn’t call to discuss a test that is generally a good sign.  But, if someone is too sick to be in contact with others than no news clearly doesn’t mean all is well.

There is story after story of people, those not sick, the healthy friends and family members, misunderstanding what it means when they do see us and hear from us.  What they don’t see is how many days you rested before visiting them.  How many days you are in bed “paying” for your visit afterwards. (It is very common for those with RD to say “I am paying for the visit” or “paying for my walk” and so forth.  It means we are in great pain, have increased stiffness, can’t even get out of bed.  The symptoms may be different for each patient, but the idea here is the same).  To them, you look great.  They know that a person can look great on the outside, but be in pain on the inside.  This does happen to everyone, but when you have a disease with no to little awareness, people can’t seem to take what they know and apply it to the chronically ill.  They saw you laughing at their jokes or smiling during the visit.  Perhaps you got around well that day which of course leads us back to paying for the visit later.  They don’t see what the visit does to you.  So they assume.  Assume all is well and how it appears.  They also don’t know how much pain you are hiding during the visit with them.  Very few bother to ask.  And when they do, do we hedge our bets and tell them or do we just say “fine”.   You are limping along.  ”Well, how are you today?” they say.  ”Oh, fine.”  ”Oh!  Glad to hear it.”  If you said it, it must be true.  Once again they themselves do that.  People may say fine at anytime to keep the other from worrying or because they do not know them well.  Maybe they lost their job, but say “fine”.  Their loved one is sick and in the hospital.  They have a funeral to attend, but they are still “fine”.  It’s human nature to do this.  Why then when someone is chronically ill do humans who understand that we all just say “fine” think that it must be true?

A friendly stranger wants to chat with you.  Let me tell you, when you use walking aids there is no shortage of people who ask why.  The interested stranger will show you more sympathy than the not interested family member or friend.  The stranger who asks has their own secrets.  Their own struggles.  It is as if they are drawn to you.  You must be safe to talk to because clearly there is something wrong with you too.  I find my exact wording doesn’t matter so much with these kind souls.  If I say RA and they have bad OA they are usually aware there is a difference.  They generally discuss their joints and any replacements they have had because although different, both lead to the same thing.  They also talk about their loved one who they have watched suffer with RA.  They tell the story with pain in their voice.  Yes, there are other kinds of strangers.  Those who can care less and you are just in their way.  Well, you clearly know who they are.  The ones who sit in a chair when there  are people standing around them that are older or using aids or clearly having a hard time standing.  They look at you with a strange look as you shift your weight or lean on something and then they go back to their phone.  There are those who see you somewhere a few times before saying anything.  Usually you are in for an earful when that happens.  To them OA and RA are the same.  I tell them I have an autoimmune disease and keep my answers short.  They tend to be the ones who want to tell you what helped their OA and should help you too.  All the cures you can try.  They have an answer to everything, so I go out of my way to make sure I do not present a problem for them to “fix”.

There are many different kinds of strangers, but the first ones I mentioned, the kind ones, want to know the truth.  Not the “fine” answers.  They actually want to know why you are in the waiting room with them waiting for an xray.  They want to connect as all humans do.  As I stated they may have severe OA, know someone with RA or they may have any sort of chronic illness or have a loved one with one.  They may be poor, disabled, but whatever it is, they are different.  Different for a reason.  Humans can sense that in others.  I found that I also tend to seek out the person with the hardest life in the room.  I have observed for years that they are the easiest to talk too.  And now, sometimes they are the only one who will talk to me.  I do not mind.  I belong to this group which is also fine with me.  We all just want human connection.  It is sad that many humans are just too busy with their own lives to care about others.  I think in America especially this is the case.  I have always fell out of contact with those who I felt were to busy looking forward to notice the flowers at their feet.  I have always felt you live each day to the fullest because you could die tomorrow.  Being ill has taught me it is actually moment to moment you must live.  I would much rather hear someone’s story of adventure or about their current hardships than sit around talking about the future of the world.  Humans cannot control the future.

And there it is.  The answer to the question.  ”How much do we share with others?”  The answer lies in the fact: Humans cannot control the future.  I think some of you already get what I am saying here.  But, we also must remember that many have wondered if the first question, “How much to share?” has any connection with awareness.  Look, we can tell everyone we meet every fact about this disease.  We can tell them everything about the patient version of RA, not the text book version.  But…until we have that name change, it won’t make any difference.  Consider a conversation I had with my grandparents.  My grandmother is very aware of how bad psoriatic arthritis can be.  My 2nd cousin died going on 2 years ago from it.  All medicines had failed.  It was a very severe case.  It didn’t take much for her to take the sadness of what happened to her niece and what she suffered through and understand what I was up against.  She is the only family member on that side of my family who gets it.  My grandma and I were discussing RD/RA and the name change.  My grandpa hears the word arthritis and interrupts and says to me, “Oh, it’s just arthritis like I have in my hands.”  My grandma says to him, “No, L—-, it is rheumatism.  Remember rheumatism?”  ”Well, oh,” he says and walks outside.  The irony….

“How much do we share?”  With a realization that the first thing is a name change to get the awareness we want (and the 2nd is to get doctors on board with the patient version, the real version of RD) then we can move on to considering the first question.  I honestly think the answer depends on the audience.  There will be moments for “fine” and moments for detailed answers.  There will continue to be relationships that fall apart because someone just doesn’t want to understand your reality.  Why? Humans cannot control the future.  If your audience is still trying to control their future, they are not ready to hear what you have to say.  If they think they can be a good person, eat well, exercise, get enough sleep and just follow a check list of what they view as the way to a good life, they will not understand your reality.  It destroys their view of the world.  They think they can avoid illness.  They will then blame you for yours.  After all, there is a checklist….

There is no fairness about this answer.  You share too much with the wrong person and they will hurt you.  But if you share with those who want to connect, you will meet new people.  I suggest you really consider who you are talking to.  If they never get it, then realize they can’t.  That may hurt especially if it is someone that you really thought would be support for you, but don’t keep beating yourself up.  Move on.  Open your mind and your horizons.  Maybe the person who does get it is someone who in the past you would not have talked to.  Doesn’t matter.  You are here now.  They are here now.  Reach out to those who are interested.  Hear their stories.  Sure, use caution, use your best judgement, but be open to the possibilities.

Oh, and take time to smell the flowers….