‘No one can understand unless they’ve been there’

I read this all the time on Facebook pages, in support groups.

I call bullshit.

i-call-bsBecause is that really the point?  Is that not just an excuse for some very self-absorbed people?  Is that just not an excuse for ignorance?  For choosing to be uninformed?  For choosing not to care?

I don’t expect the people close to me to understand the details of my disease(s).  My pain. How it feels.  The fatigue.  The myriad off effects it has on my life, that go way beyond simple joint pain.  I don’t expect people to understand the big picture, nor do I expect them to understand the small details.

But I do expect them to understand THAT I have a serious disease. THAT I am in painTHAT I have limitations and that I am VERY honest about what I can and cannot do.

NONE of that is hard to understand.

Everyone has a point of reference for pain. Everyone has a point of reference for feeling sick, nauseous, exhausted.  Everyone has had to miss out on some event that they wanted to go to because they weren’t well enough.

These are things that everyone can understand, and has experienced.

So why,  when some ‘friend’ is rude and calls us lazy or a faker or a liar, do we just brush it off and say ‘Of course they can’t understand, they haven’t been there.’

They can.

They should.

If they are a true friend. If they truly care about you. They should.

In every way that’s important, people can understand that compassion is required.  And compassion should be given.

It’s not an excuse to say they can’t possibly understand the disease or the pain.  That’s no excuse at all.

I have a friend who has been in love with a man for more than ten years.  Someone who is not in love with her. I have no idea how that feels, I’ve never been in that situation.  But I understand that she hurts every time their paths cross.  Just when she’s forgetting about him, there he is again. And she calls me and we have the same conversation, over again.  She needs to talk about it.  She needs support. It might sound a little crazy to people that she cannot move on. But she can’t.  She tries.  I hope for nothing more that she might meet someone else, and fall in love anew.  But until then, we talk about it. And I listen.  And I empathize.  I don’t have to have experienced what she’s experienced to empathize and show that I care that she’s in pain.  I just have to accept that she IS in pain.  And we talk until she feels better.  And I don’t give her ‘good advice’ like ‘just get over it’.   Or ‘It’s all in your head.’

I have a friend whose son has just been expelled from school.  He was caught doing something so against school rules that it’s an instant suspension.  She is devastated. Can’t believe her child could have done this (although it is true, he has admitted it).  I haven’t been in THAT situation either.  But I know she is hurting. I know she is devastated. I can imagine how confused and upset and disappointed and hurt she is.  I listen as she tells me she feels like she doesn’t know her son at all anymore.  And I can imagine those feelings.  So I listen. And I empathize.  I don’t tell her that it’s all her own fault, because she’s clearly a bad parent!  That she should have just tried harder!

Another friend lost her mother last year.  I didn’t know what to say.  I haven’t lost my mother. But I could imagine my friend’s loss and devastation.  I just told her I was sorry. That I cared. That she could call me any time.  Sometimes she just came over and we were silent.  But she had a place to go when she needed to escape.  I didn’t tell her to just pop an anti-depressant and get on with it!

Recently there has been a terrible earthquake in Nepal . I see footage on  TV.  Buildings destroyed.  Injured people.  I know there are thousands dead.  Lives have been destroyed.  Families are grieving. I have never been through that, but I can understand that these people are in terrible pain and need help.

I could go on and on and on about things I see in the world, that I understand to be painful, even though I have never been through something similar.

I don’t have to have experienced something similar to be compassionate. To be supportive. To empathize. To care.  We all have problems. I don’t have to have experienced all of these problems personally to provide support and empathy and compassion.  All I have to do is accept, and believe that my friends are in pain.  That’s all.

And therein lies the problem.  People don’t realize that a diagnosis of severe rheumatoid arthritis is a life changing event.  That it’s a life limiting disease. That it affects every aspect of your life. That it is serious.  That it is devastating.

There is no general awareness of the potential severity of the disease.  And until there is, there will be no compassion, no empathy, no understanding.

Why isn’t this common knowledge?  I think a huge part of the reason is that it’s such a variable disease. Some RA patients do very well.  Some have mild disease, or respond to medications and live a fairly normal life.  The perception out there is that ALL patients are this way.  All patients respond well to treatment.  All patients reach remission.

Nothing could be further from the truth.

30% of us have severe disease. And 30% of those don’t respond to any current treatments.  So we are a minority, but considering how many people HAVE rheumatoid arthritis, that’s still a huge number of actual people, even if the percentages sound small.

And it’s those of us that gather in communities online, in Facebook groups, here at CreakyJoints, most of us are those severe people.  Who suffer the disability and pain of the disease, compounded by the misunderstanding and lack of compassion.

We get told to stop whining. To get on with it. To push through. To think positive. To try harder. That it’s all in our heads.

The world at large simply doesn’t understand that rheumatoid arthritis, or arthritis of any kind, can be that serious a thing. Can be that severe an illness. Can affect your internal organs. Can take away your eyesight.  Can take away your functional life and leave you disabled.

But they should  know. They can learn. They can understand.  If they choose to.

So no, the ‘no one can understand it unless they’ve lived it’ argument? No. That doesn’t cut it. You don’t have to have lived rheumatoid arthritis, or any disease, to show you care or provide support. If you don’t know what to say, then SAY you don’t know what to say. If you don’t understand, then SAY you don’t understand.  ASK questions. Learn.  Get educated. Or, just accept and believe.  Just be there.

Just listen. That bit is so important I’m going to say it again.


Just the fact that you are there. That you are listening. That you care enough is plenty. It is everything. You don’t have to say the right things.  There is no ‘right thing’ to say.

Just be there.  Just care.  Believe. That’s all.

And the people that can’t do that? It’s not because they can’t possibly understand because they haven’t lived it.

It’s because they don’t care.  And hard as that may be to accept, that’s the truth of it.

You can accept them as they are, you can tolerate them, you can try and educate them or you can kick them out of your life.

But don’t make excuses for them.