The truth about living with Rheumatoid Arthritis

Relationships

People who make my illness about them

I have to call someone close to me, and I don’t want to. Because I know the conversation will bring me down.  Why?  Because she makes my illness about her.

Huh?  How in the world?

This.

For a long time I didn’t let on how severe my illness was. I kept it private, hidden.  Eventually, with people to whom you are related, you can’t hide it. You are expected to attend events, and you can’t.  Or you show up and you are so clearly in terrible shape that you have to spill.

And now, lately, this person calls every other day to ask how I am.

I am the same.  Nothing has changed.  No, I am not better.  And no, I don’t want to talk about it every day!  I do my best to put it OUT of my mind, and these calls make me sit down and waste an hour of my day on a very negative conversation.

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Rheumatoid Arthritis is a serious disease

Someone told me recently that Rheumatoid Arthritis is NOT a serious disease anymore. Her logic? Because people rarely wind up in wheelchairs anymore.

Oh. My. God.

Excellent reasoning. Sorry, I missed that pertinent point – my joints have been hurting far too much for me to really look at it from that angle.

I must also add that this woman is someone I have known for many years. While we don’t spend every weekend together, we have gone on holidays together, and regularly get together for dinner and a glass of red.

And she’s a podiatrist. Yep. She works with people who have RA all the time. She’s a podiatrist who treats people’s deformed, painful feet on a daily basis, and she believes Rheumatoid Arthritis is NOT a serious disease.

I was speechless.

It’s clear to me that she is not a stupid person.  But she was being a mean person.  A nasty person. She wanted to upset me.  To demean me.  She felt her personal situation was worse than mine, therefore she said Rheumatoid Arthritis is not a serious disease. Some people need to play ‘my pain is worse than your pain.’

I told her that I have been in pain every day for the last four years. Some days that pain is unbearable. The pain never, ever goes away. I paste a big smile on my face and get on with things, because there is no other option. She didn’t flinch. I could almost hear the ‘yeah yeah…’

I take some very serious drugs, for a serious disease.  Some are used in much higher doses as chemotherapy.  The much lower dosage makes a huge difference of course, but they still have very serious potential side effects.  Yes, there are mild cases of rheumatoid arthritis. Those cases get treated with an anti-inflammatory (nsaid) or plaquenil. And if there’s no organ involvement, maybe it isn’t as serious a disease.  That doesn’t mean it doesn’t cause some serious pain though.  And mild RA can become severe RA.  Overnight.

You can tell how serious a disease is, by the treatments that a doctor has prescribed. Google methotrexate. Google Imuran. Google arava. Google presnisolone. Google Humira, Enbrel, Rituxan, Actemra. Read people’s experiences. Look at the potential side effects. Google oxycodone and morphine.  Pretty serious stuff.

Without a doubt the medications I take are shortening my life. Without the medications I take, I HAVE NO LIFE. I would be curled up on the couch, unable to move, unable to do anything but cry. That’s pretty serious, if you ask me.

Rheumatoid arthritis has attacked my kidneys, my heart, my eyes. My liver is doing pretty well, but the medications I take are working on that. Pretty serious, if you ask me.

And yet, people still feel it’s OK to stay stupid things to me like ‘Rheumatoid Arthritis is not a serious disease’.

Rheumatoid arthritis has taken my career, my marriage, my financial future, many of my dreams and most of my future plans.  Rheumatoid Arthritis IS a serious disease!

It has also taken most of my friendships. Or rather I have gotten to the point where I no longer wish to continue a friendship with a person who cannot understand the reality of a life of chronic pain. That may not make them a bad person, perhaps just a self involved one.  (Just!). But it sure doesn’t make them someone I want as a friend either!  And because I keep smiling, work hard and look good on the outside, even people close to me believe that I am not very sick.  And they think its OK to tell me so.

Because I don’t spend my entire life talking about, dwelling on, and complaining about pain, people forget its there.  I’d LOVE to forget it’s there. That is indeed one of the reasons I DON’T spend my entire life talking about pain.  Talking about it means thinking about it…dwelling on it.  I prefer to try and distract myself, and block it out.  Not possible with severe pain, but I try.

I no longer see this person. I never wish to. Not because she is a bad, horrible person. She has good qualities, we all do. But she is lacking the one major quality that I need from the people in my life – compassion.  And the understanding that Rheumatoid Arthritis, certainly the way that I have it, IS a serious disease.

Whether you use a wheelchair or not.

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Rheumatoid Arthritis and Friendships

When you think of the casualties of chronic disease, you don’t immediately think of friendships.  Our relationships with others are built on a variety of factors.  Sometimes a disease like rheumatoid arthritis changes our ability to do the things we used to do, be the person we used to be.  Some relationships don’t survive.

Many relationships don’t survive.

I had coffee with a fairly new friend yesterday.  ‘New’ as in I haven’t known her very long.  We’ve started getting together for the odd coffee, talking about life, usual chick stuff.  It’s been really pleasant.

Yesterday we met for lunch.  After about 15 minutes of chat she asked me if my jaw was giving me trouble.

It was.

I asked her how she knew?

She said ‘The way you’re talking.  I can see that you’re trying to open your mouth as little as possible.’  Then she laughed and said “Also, you ordered the soup!”

She remembered from a few weeks ago, when we’d only just met, that I’d make some crack about everything in my meal plan needing to be blendable that week.  We had talked briefly, and in a light hearted way, about my RA.  It was a quick conversation – I try to educate, but not drone on.

But she remembered.

It didn’t go in one ear, and out the other.  While she was listening as I briefly explained about arthritis in your jaw, and TMJ disorder, she wasn’t just faking the right noises and thinking about what she was going to say about herself next.

She really listened.

She learned that rheumatoid arthritis is not a disease that old decrepit people get.  She learned that it is a serious illness.  She learned that it can affect all kinds of joints, not just hands and feet.  She stopped and really thought about what a pain in the arse it truly is to not be able to open your jaw all the way.  Or to have it locked shut.

She learned.

She did all of this because she is a special person.  A person who is not completely wrapped in her own problems.  Someone who is able to empathise with others.  Empathy is a trait sorely lacking in our fast paced, instant gratification world.

It’s a trait I have found in many people who have suffered tragedy or illness.  I suspect as I get to know her better, and she trusts me more, I will discover something in her life that causes, or has caused her, great pain.  I hope she trusts me enough to tell me one day.

I hope even more that there is nothing, that she is just a naturally kind and caring person.

I have always said that saying that rheumatoid arthritis is an invisible disease is a fallacy.  At least in moderate to severe cases, the signs are clearly there, easily able to be seen.  But only if you know what you’re looking for.  And only if you care enough to pay attention.  And I’m not talking about deformed hands…thankfully we don’t all suffer obvious joint deformity.  But the other signs are just as clear.

My new friend listens, learns and remembers.  She’s an amazing person.  She’s a keeper.

 

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Rheumatoid Arthritis – chronic illness and marriage breakdown

I’ve heard about it a lot.  I’ve read other people’s accounts.  I understand why it happens.  But I didn’t think it would happen to us.

My marriage has broken down.  We are separating.  Not permanently, perhaps.  But we are taking some time to think things through.

Is my disease the reason?  Not the entire reason.  But it is probably the main one.  It is certainly the catalyst.

The bottom line, fact of the matter, is that I am no longer the same person that my husband married.

The rules have changed a lot, and he liked me better the other way.  Yes, we all promise better or worse, sickness and health…but do we really think anything bad will happen when we take those vows?  Do we really know how we will react until it *does* happen?  Aren’t we making promises we have no way of knowing if we are capable of keeping?  We like to think we will step up, but we have no way of knowing until we are tested.

So I’m not angry at my husband (well, not most of the time – I’m not a saint).  I am in pain every day, and I guess talk about it a lot.  My life revolves around medications, side effects and which joint is hurting the worst right now.  I can’ walk very far, and some days I can’t really walk at all.  I swore than RA would not rule my life.  But it does, I guess.  I am not the person I used to be.

When I go into a flare, my husband walks away.  Literally, figuratively and emotionally.  He spends more time at work, at the gym, or just in another room.  Anywhere but with me.  So I feel very alone, and I tell him all the more that I am in pain and I need him.  So he feels even more trapped and pulls away more.  I can see the cycle, I just can’t break out of it.

And the truth?  If roles were reversed, how would I be?  If I could walk away from RA, and all that goes along with it…would I?  Or do I love my husband enough to stand by him no matter what?  It’s not a question I have to answer…I would stand by him forever, through whatever, no matter what.  But I’ve thought hard about it enough that I at least understand where he’s coming from.

He feels terrible about it.  He feels truly guilty that he can’t support me.  He feels awful about the fact just wants to get away from me whenever I’m in a flare.  He feels horrible blaming me for the negative environment in our house.  And blaming me for his own depression.

Rheumatoid Arthritis is forever.  Not all marriages are.  I understand that  he feels his whole life has been rearranged without anyone checking with him, that all of his choices have been rudely taken.  I understand how that feels…the fear, the uncertainty…the sense of the trap clicking shut.

I understand because I went through all of these emotions as well.  And I have the added distinction of actually living with the pain and disability as well.  But my lack of ability affects him just as surely. And his pain is there, its just a different kind of pain.

So I set him free.  And, irony of ironies, now that I have said ‘you’re free to go’ he doesn’t want to.  He wants to try again.  He is promising me the world to just give him another chance.

But I can’t trust him.  I can’t rely on him.  I don’t believe that the next time I have a full body mega flare, or an issue with my heart, or my kidneys, or whatever else, that he will be there.  That he will be my rock, that he can be strong.  That he will stand next to me, and put his arm around me and tell me everything will be alright.  Because he’s never been there before, he has always walked away.  And we’ve been around this issue for the last year or more.  I have told him its over,given him another chance…and around we go again.

No more.  I have to draw the line now. He has to go.  And if he loves me, if he really does, he will find his way home.