Tuesday, 5 October 2010


I was hanging out with my flatmate the other night and for some reason we were talking about MS, and she mentioned that out of her mum's best friends from high school her mum was ok health-wise, one of the others had cancer, another had a series of heart problems and the last had MS. And then she said "Imagine, that could be us one day, scary!!" and I went...."Um, well.. I already have a disease, remember?" and then it got a bit awkward and quiet and we changed the subject.

I honestly believe she forgot. She was right there last year during my diagnosis and saw me crying my eyes out and going through the motions. And she read up on RA so it's not like she's ignorant about it. But I honestly think she meant no harm and just because I've been well and haven't mentioned my arthritis for months she just forgot. Or maybe she doesn't think it's as serious as cancer or MS? I don't know.

I wish I could forget too, unfortunately even though I'm well there is still something to remind me of it most days. I wonder what everyone that knows about my RA thinks. I was a MESS, seriously..for like 3 months I was an emotional wreck. And now I'm back to normal I guess. I wonder if they think I made a big deal out of nothing, just because I now don't mention my daily problems. And yes, those problems have decreased significantly and my mood has lifted as well. I hope they don't think I made it all up. I wish I had!!!


  1. The other day a group of moms was sitting together discussing illnesses/disease. The husband of a new mom has an autoimmune disease so I was sharing my story. When I shared the last two years in a horrible flare a very good friend of mine said, "Well, you did okay. You managed." I looked at her in confusion and thought, "You have no idea. I thought you did, but you didn't." I often feel the same way, that people maybe think I am making things up. I try not to talk about it often or be obvious about my limp or inability to lift things and I think people just tend to think that I must be fine. Sometimes I think that is good that they don't reaize the pain I can experience and other times it kind of makes me mad that they don't realize it.

  2. This is one of the toughest things to deal with (well, you know, aside from the extreme pain and killer fatigue).

    People do forget, and they do minimize our disease. I think it's a combination of not understanding, garnering knowledge about RA from stupid painkiller commercials, and our own minimizing of our pain.

    I get sick of myself! Honestly, sometimes I can't handle myself complaining anymore, so I hide it. In all truth, I don't think I complain that much, not as much as I could anyway. I just don't always want attention drawn to it.

    But, the close friends and family settle into it. They get used to it and recognize that it is not all that you are, but it is a part of your life.

    Take care Squirrel :)

  3. First of all, if your friend forgot after seeing you cry. That just sucks. Plain and simple. I'm sorry. : (

    Very well said, Pony. People do forget and they definitely minimize our disease for the very reasons you mentioned I believe. Hate those commercials!

    We have to think about our disease all the time. So when people forget and minimize the diagnosis we've been slapped with--it really hurts! I've been in the same situation as you, Squirrel. It makes me wonder where certain friends were when I was sharing my heart with them. Were they listening?! They have no idea what it is like to live with the knowledge that we have a disease that isn't going away and has an uncertain future attached to it. So, they forget to ask how we are doing if they see us getting around ok and refraining from complaining--and they get busy with their own lives. But I have to hope that sometimes friends are afraid to ask. They don't want to bring up a sensitive subject or be a downer.

    I struggle all the time with whether or not I should tell more friends what I have been dealing with. And then I choose not to because I could do without the additional judgement and hurt because they will never truly understand.

    But we get it, Squirrel. And we know that it's real. And we WON'T forget. That's why I love the blogging community.

  4. Thanks guys! It's good to have an outlet for a bit of a rant. Cathy, sorry about your friend's comment. Maybe she meant it as a compliment, like... 'you dealt with the bad situation well'? Ugh!

    Pony, I agree with you, there are many many times especially when I'm having a normal day that I don't want to talk about my RA. It's always in the back of my mind no matter what, but some days it's further back than others if you know what i mean! It would just be nice if friends thought before they spoke. Then again maybe I've done the same thing to them in regards to some other situation?

    Rheumforgod, I think they might be afraid to ask too. Maybe I would be too if the situation was reversed. Afraid of upsetting me again or something. I don't know, maybe I need to write my good friends a letter or something and try and explain it and then if they don't take notice, I'll know who's a true friend.

  5. Hmmm, good point! We probably have done something similar to friends in the past. Maybe this is an example of how nobody's perfect. However, I like the idea of writing your friends a letter. You can be honest and get everything out there at once.

    Have you read the Spoon Theory? It's a perfect explanation to friends about living with a chronic illness and how we have to balance, bargain and measure everything that we do when dealing with pain and fatigue. Here is a link: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

    The whole website is excellent, focused on individuals with invisible disabilities. Take care, Squirrel :)

  6. I was talking about this the other day with my family. People that know do seem to 'forget' since there is no outside reminder. Well, unless I'm grimacing in pain, limping, or carrying my arm weird. But most days, with 'normal' pain, it doesn't show on the outside. I get patted on the back, hugged around the neck, or even do my normal duties without any one offering help because there is nothing outwardly to remind them. If I had a cast, things would be different.

    I hear you, I wish there was a way to change that and I'm sorry you experienced such a weird (and I'm sure hurtful) moment.

    I'm a follower now. Stopping by from http://throughpainandsmiles.blogspot.com

    Take care

    ~ M

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