Rheumatoid Arthritis awareness…fail

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A good friend came over the other night, as she often does, for a glass of wine.  We’ve been close friends for many years. She is the only friend I have who knew me before I got sick.  Admittedly she didn’t know me ‘healthy’ for very long.  I have been messed-up-chronic-pain-girl longer than I was bad-influence-get-her-drunk-at-the-pub-girl.

We have a few wines every week. Sometimes we laugh a lot, sometimes we talk about deeper things.  She has seen me on good days and bad days.   This day she had something on her mind. Something that was troubling her.

A friend of a friend. She didn’t have all the details, but she’d heard that this woman was ill. She was very ill. She IS very ill.  She has some sort of disease, they (the doctors) aren’t sure what. It has attacked her kidneys. It has attacked her heart, she thinks?  She suffers from chronic pain and is often house bound now. This woman was previously very fit and a gym junkie…now she can’t walk.  The husband was an asshat and had left.  My friend said it was some sort of virus or something.  Something that made her body attack itself. Or something like that.

I’m thinking autoimmune, of course.

‘No, I don’t think so.’ says my friend. ‘It’s really serious.’

Ouch moment.

Nevermind.  Carry on.  She didn’t mean that.

I’m wanting to change the subject now, because I know that I’ve been in too much pain lately, and I’m feeling too emotional for this to end well.  But my friend is on a roll.  She continued.

‘It just came out of nowhere. One day she was fine, and the next she was in so much pain she couldn’t get out of bed.  She saw doctor after doctor, but none of them knew what was wrong.  She nearly died.’

She went on to talk about how frightening it was. How precious life is.  How scary it is that these things can just happen from one day to the next.  How you have to live life to the full.  How no one knows what’s coming next.

I whole heartedly agreed.  But still couldn’t quite believe she was saying this to me.  So I said to her that it actually sounded pretty familiar.  To give her a hint that maybe she was missing something here.

I was holding back tears.  Luckily I’m such a hard-faced-ice-maiden-bitch-goddess that no one can ever tell when I’m holding back tears.  Except for those rare occasions when I fail, of course. So I calmly asked if she was sure it wasn’t Lupus?

‘No’ she said.  ‘It’s something much worse.  She was on chemotherapy and everything.’

Chemotherapy.  I didn’t even ask her what kind. If it was methotrexate. She wouldn’t have known the answer.

It sounded so familiar.   The way the disease was being described sounded like a perfect layman’s description of something like severe RA, or lupus or any other severe form of autoimmune arthritis.  Or any number of autoimmune diseases.

It could be something entirely different, of course.  But it just highlighted how little understanding there is. How someone so close to me didn’t recognise me in the story she was just told a few hours earlier.  And then turned around and told me that this other woman had something far worse than I did.  And perhaps she does. I don’t know.  But that’s not really the point.  We are both far below where a normal human being functions…the details of who is worst off is academic.

And I was having a bit of a hard day…and it hurt. My friends ignorance.  And her incredible concern for this friend of a friend. This virtual stranger.    As I sat before her with a heat pack held to my jaw and a heated throw wrapped around my knees.

I know that’s partly my fault. I keep a smile painted on my face, for the most part.  I tell people calmly and quietly when I am in a lot of pain. I don’t moan and writhe around.  I very rarely cry.  I don’t really make a fuss, unless it’s really bad.  Even then, my idea of a fuss is pretty small time.  But I can’t change who I am.

I guess that’s why this blog came into being.  A safe place for me to let these emotions out.

There is something about me that doesn’t inspire empathy.  Or compassion.  Or caring.  I don’t know why.  Everyone knows that I am fine. That I will be fine.

And I always am.

11 COMMENTS

  1. Hang in there girl. Yes it hurts, and it’s even worse because she is such a close/longstanding friend. I hide it too and don’t share unless it’s really, really bad. I don’t like to let people ‘in’, or ‘open myself up’ and, as a result, I know that many just don’t understand what is going on day to day. We are our own worst enemy sometimes. I don’t know how you can tell her that you are going through the same but you need to. It’s important that she understand. In the meantime, take care, stay strong and remember you are not alone! God Bless

  2. I totally get it! It wasn’t until I started having knee surgeries and the surgeon came to my family after surgery and told them that I had much more damage than what he had thought since I rarely complain about how much I’m in pain. If I’m hurting severely, I go to bed, so they don’t see me in “that much pain”. And three years later… I was diagnosed with RA. The whole idea of being 28 and having the body of an 80 year old just doesn’t register with people. and neither does the idea that auto-immune arthritis or any other disease can affect other things than just joints.

  3. This article is beautiful and really spoke to me. I can completely relate to not inspiring empathy. All around me know I will always be fine as well. My disease is all but forgotten in their minds and those around me are never concerned. It hurts sometimes, but I know it because I’m strong. I just wish I felt strong.

  4. Hi,
    I just want to hug you. I’ve had similar happen to me..in fact I bet most of us have..
    I think its maybe because its been relayed through another person who is coming across this as new?
    I don’t know, I just know I’ve heard tales of terrible woe about others from some close to me and I’m sitting there in amazement thinking..you never even acknowledge what I’m going through and this is sounding so less severe..
    I even wonder if they are trying to tell me to shut up, or that i’m not the only one with problems..
    But I think that sometimes they just don’t see whats in front of them..
    Remember..we’re all here for each other,
    D

  5. I want you to know that I empathize with what took place between you and your friend. You express yourself so well. You should write a book bout your experiences with chronic pain. I’d certainly buy the book!!!!
    Dina

    • Thank you Dina. I really appreciate that – both your empathy and your vote of confidence. And I’ll let you know if that book is ever more than plans in my head 🙂

  6. I can totally relate to how you feel and felt that day. I suffer in silence a lot as I don’t want to bother others or my husband. Don’t get me wrong my husband is amazing, but it is so disheartening when you are asked how you are doing/feel and usually the answer is one of the follow: “I hurt”, “I’m exhausted”, or “I just don’t feel good”. I don’t want to bother others with my pain because most people (unless they have the disease themselves) don’t understand how someone my age could be in so much pain or the disease. Thank you for sharing. I totally understand where you are coming from. Stay strong and I agree that you are an eloquite writer 🙂 Thanks again!

  7. Hi. I just came upon your web-site and have read several of your blogs. Your story seems very similar to mine, so what you’ve written really hits home. I’ve been sick for over 25 years but it wasn’t until recently that I was officially diagnosed with inflammatory arthritis. First, in my teens I was told I had costochondritis, then told it was just fibromyalgia for many years, then a couple of years ago I was told I also have psoriatic arthritis with spondylitis. Now my rheumy is also telling me I have rheumatoid arthritis, on top of the PsA and FMS, as well as a whole laundry list of additional degenerative and autoimmune conditions I’ve collected along the way.

    I have been on methotrexate and Remicade infusions for a couple of years now but still have very concerning symptoms. It’s very overwhelming and scary. My husband and pre-teen son are supportive and helpful, though they are also overwhelmed with all that I have to deal with. I feel terrible for them that I can’t be a normal spouse and caregiver, so I try very hard to cover up things and do everything I need to do to appear normal. It’s very hard and sometimes I can’t help but drop the façade and break down.

    My mother seems to finally understand what’s going on with me because it’s happening to her also. She was recently diagnosed with both PsA and RA too. She was recently going for pre-op for hip replacement surgery when doctors found blockages in her heart and she ended up needing open heart surgery. She has recovered well from the surgery but still feels horrible due to the arthritis. She empathizes with me now that she’s feeling the same type of pain, though she still hates to hear me complain about it. She used to think I was a hypochondriac when I was younger and then just that I complained way too much when I got older. Now she gets it, mostly, though she still wants to be in denial a lot of the time. She lives far away from me and calls me to complain about how bad she feels. Guess it’s her turn now…

    However, other loved ones still don’t seem to get it, and may never will. My older sister is sick with very similar problems but refuses to be checked. She has told me she doesn’t want to end up like me. Like it’s my fault that I’m the way I am and my fault if she has the same inherited conditions. Go figure!

    My father still has a lot of trouble accepting that his baby girl (I’m 44 years old) could have so many problems, even though his mother had RA and ankylosing spondylitis runs in his family. Another go figure! My family just doesn’t get the concept of genetics! He actually reminded me the other day how one of my much older cousins (non-blood-related) has ALS and suffers so much more than me, so I should have a more positive attitude like her. He implied that I’m not so sick in the grand scheme of things, so why do I complain so much? He actually said that if only I didn’t go to the doctors so much, I would feel better. Like if I ignored all my problems they would just go away. WTF?!

    I then tried to explain to him, yet again, how the chronic autoimmune diseases that I have dealt with pretty much all my life are progressing and becoming debilitating and that all the medication I have to take in order to function as a mother of an active boy are also taking a toll on me. I tried to explain to him how I chose to get aggressive treatment finally so I can live longer and have a more fulfilling life and be able to care for my son and see him grow up and have children of his own. I apologized for not always feeling so positive and cheerful when I speak to him on the phone once a week, and explained to him that I try to only complain to my family, hoping they’ll understand and finally accept the way I am. Most people I know, including my most dearest friends, have no clue how bad off I am and how hard my life is because I have learned to smile and keep my mouth shut as much as possible so that the rest of the world won’t be made to feel uncomfortable in my presence. That hurts almost as much as all the physical crap. So I totally can relate and empathize. Few people get it so it’s good to know that there are others out there that do. Thanks for sharing!

    • Brought tears to my eyes Amy…Go figure indeed :(. I will write more later…I am in need of my bed! But never apologise. They don’t understand what you are forced to live with. You’re not the one that should apologise. You’re a strong and beautiful lady.

  8. Thanks for the chance to vent and your kind words! Honestly, I feel bad that I went on like that and hope no one I know sees all that I wrote. It’s still hard for me to talk openly about how I feel as I was brought up to keep my feelings and pain quiet because nobody wants to hear “belly-aching.” It’s even hard for me to tell my doctors how I truly feel because I’m afraid they’ll think I’m whining or making it up. I’ve had so many people tell me that it’s impossible for someone to have so many problems, I even wonder how I can be this way. Then I think about that a little more. My mom has always told me stories of how sick she was when I was born, how she was out of it for days and didn’t even know what my father ended up naming me till days after I was born. I was sickly and colicky for a long time and the doctors told my parents I had an “underdeveloped” digestive system. Till this day, I still have a problematic, irritable digestive system. Now, so many years later, I’m being told I have a deficient immune system which, along with genetics, is presumably why I’m so sick. I have come to accept that my immune system just didn’t develop properly either, making me more susceptible to sickness and autoimmune conditions. It’s a little easier knowing I was most likely born messed up. And, I just keep telling myself that I’m lucky I’m not even worse off than I am already! How’s that for thinking positive? Always trying… ;o)

    • The truth is more like when you DO have something wrong with you, you are so much more likely to have lots of things wrong with you. And it really, really sux, because you become seen as a whiner, or making it up. Getting sick does weed out the people who really care, though its a hard process. And you do meet some great people who DO understand. You are welcome to vent and whine here whenever you need, Amy. Or go to the facebook page. YOu’ll find lots of people who understand what you’re going through.

      Accepting that you’re sick and that medicine hasn’t really got you figured out is a really tough thing to deal with. Especially when most people seem to think EVERYTHING (except cancer) is curable with a pill these days. So if you’re not cured, you MUST want to be sick…for the attention, right??? LOL. Sorry, its not really funny. And you are thinking positive. I remind myself that others are worse off on a regular basis. That doesn’t mean I’m not bad off, but it helps me appreciate that I have a LOT of good in my life as well. I still HAVE a life, even if its not the one I planned. And there is a lot I’ve still got left to do, and I will get there. Take care of yourself Amy, and keep in touch.

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