‎15 Things Not to Say to Someone With RA (or MCTD)

February 28, 2011

I came across a great article through the Facebook page LivingChronicallyFabulous which was titled 15 Things Not to Say to Someone with RA  and although I suffer from Mixed Connective Tissue Disease, I couldn’t help giggling at how many on the list I could relate to.

Before I highlight a couple of points that I can really relate to, I have to say that I know that anyone and everyone who has made any of these comments to me has done so with my best interests at heart, simply because they really want to help and feel helpless.

I really appreciate the care and love everyone shows me and I thank you.

However, take a squiz at the article and it might provide a little insight into how it feels when you’re struggling with a chronic illness day in and day out, you’re swallowing truckloads of pills just to be able to get out of bed in the morning and after a day at work when you still have to come home and cook dinner, clean up and face a possibly sleepless night – exercise is the last thing you want to put your body through-and yet you still smile and thank people for their unsolicited advice.

My favs from the article:

  • Those drugs are too dangerous: Yep the meds I am on are full on, they have serious side effects and they might cause damage to my body…but the fact is, MCTD is a serious disease and without them I literally would not be able to move without extreme pain. My rheumatologist has studied and worked for years and I trust him…along with my own research so please don’t comment on my medication regime.
  • You need to exercise more: Ok, so maybe I do, maybe the long term benefits of exercise will be positive but when it hurts to walk too much, jolts me with pain to lift my arms too high and repetitive moves hurt so no, I’d rather rest my aching body after a day at work than swim, or do pilates or yoga or walk.
  • You need to change your diet: I understand that some autoimmune disorders are affected by diet, however, my doctors aren’t advising a change in diet and to be honest, I don’t eat terribly but do get a lot of pleasure out of the food I eat. I don’t want to stop and cut things out so please stop suggesting it to me.
  • Have you tried glucosamine?: You’d be surprised how often this is suggested to me, apparently it is good for osteoporosis and certain joint issues but not RA and apparently not MCTD either.

That’s just a taste, I write this with a smile on my face because I’m not really bothered by these comments but it’s always entertaining to read an article you can relate to so closely. But I reiterate, thank you all for your care and support….and no, I’m still not doing Yoga.

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7 Responses to “‎15 Things Not to Say to Someone With RA (or MCTD)”

  1. Bev said

    ah yes – it’s an exersise in frustration, eh? and, at the end of the day, you’re the only one who is in your shoes, and can be the only one to make your decisions on how to live your life? but, there are many who are well-meaning in their “help” and do feel the need to offer up any little tit-bit that might be useful, but it can add to the frustrations? and, on reading the 15 things on the RA article, this fact becomes glaringly obvious to me – as i’ve done the alternative medicine route to get myself into remission etc. and the “well-meaning” “help” that gets offered up to me are more or less the same, only different, in regards to the treatments for permanent damages that my body sustained. so instead of giving me grief over using too many drugs, i get looks of horror at the vitamins/herbs/etc that i consume, and advice that i might like to know how dangerous “snake oils” could be for me? or, as i’m into pushing myself to acheive the most with what i do have, i get admonised that i should rest/relax and take it easy (as opposed to try exersise). then, instead of “i thought you’d be better by now” – i get the “how come you’re still here!! WHOOOAH!! similar to the “i know someone whose got it worse than you” i get the disbelief ’cause someone they know has got it, but they don’t have the same problems that i have, so…… hmmmmm…. and, as opposed to carrying too much weight – when i was really-really-really ill, i lost lots of weight and got harassed for it, as if i’d done it on purpose? wt? or worse, i got insensitive remarks about how they wished they could lose weight like me! WT??? (of course i would offer for them to take the SLE and etc) and, as well as comments about how good i might look ‘considering’, i also get comments on how tired i look, and that i need more sleep —- but, we all know, if you’re kidneys are struggling, you’re just gonna have those rings and bags under the eyes, irrespective of how much sleep happens? and, as for the all in the head, or needing anti-depressants — no-one i’d know would dare with that one!! but, guess it’s all just general human failings? so, we have to smile and shrug it off, and just focus on what’s important in the long run?

    meantime, don’t know if you’ve stumbled across this article, which i read some years ago when i was first getting used to the new SLE-me, and i found it really helpful? http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

    anyhow, wishing you heaps of energies for coping, and lots of coping mechanisms…… cheers, bev.

    • Thanks for this Bev. The spoons story had me blubbering at lunch time. So spot on. Thanks for sharing.

    • Karen said

      As someone who has just recently been diagnosed with MCTD I am struggling with my own feelings and frustrations let alone trying to explain it to family and friends. I shared this with my husband to see if it helped him and I think it did help. Thank you

  2. suiestewie said

    I enjoyed your article (and link). I was trying to make a workable link of this page in my latest blog about RA but I must be doing something wrong! Suie

  3. I agree with you! I stumbled upon the same website and just giggled at a few of them… the article was so true! My favorite comments are: “But you’re only 22, it can’t be that bad,” or “Yeah! My grandma has that!” Which if she does… please give me her number because it’s so nice to know someone out there knows how it feels and can offer me REAL advice other than exercising or diet change.

    I also have MCTD, but my RA is the main component (says my doc) and the one that really gives me the most day in, day out trouble.

    Hope all is well in your land and that your MCTD is playing nicely!

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