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Regular Member

Date Joined Aug 2010
Total Posts : 49
   Posted 8/21/2010 2:58 AM (GMT -7)   
I'm the kinda girl who tries to just gets on with things (in public anyway), and most people don't know anything is wrong with me. So, I guess it's my fault to a degree, but I find it frustrating when I need to take a rest, or take things a little slower than others might expect someone from someone of my age / physical appearance... I go through the internal "do I / don't I" (tell them about my condition)...

We have an election here in Australia today and I had to stand in line for nearly an hour to vote. It nearly killed me. I watched as the elderly / invalid were ushered past to the front of the line and I wanted to scream "take me too!!!" but didn't, of course, because, externally, I look like a very healthy young woman.

I also have a situation where I'm going to be moving offices and am considering just how much to tell my new "room-mates" (for lack of a better term). The MTX tends to make me a bit crazy the day after I take it, and my temp goes up very quickly without warning, and I think I'm going to have to tell them (at the least) that I'm on some medication that messes with my body temperature... but not sure how much to tell them because of the mixed reaction I've received to date (only diagnosed about a month ago, after years and years of pain, doctors, tests, etc).

I'm very keen to remain "Mel" not "Mel with .... " (oh poor Mel").

So, I'd like to know - do you tell people in your life about your condition?

Regular Member

Date Joined Nov 2006
Total Posts : 76
   Posted 8/21/2010 4:17 AM (GMT -7)   
Hi MELttdown, that's a good question.  When first diagnosed (4 yrs) ago, I did not tell anyone but my Mother and Sister and asked that they not tell anyone, of course my Mother complied but somehow I guess my sister did not pay attention, she also told her daughter. 
So now when we are with anyone she somehow manages to get around to telling that person or persons that I have Arthritis and RA.  I would rather not anyone know.  I also told two of my best friends and they have not told anyone to my knowledge. 
My doctor did not put Lupus down on my records for insurance purposes, only Inflammatory Arthritis and RA.  Sometimes I feel like I need extra care too. 
I just started a new part time job a month ago (on my feet alot).  It has been very difficult for me.  Especially since no one at work knows.  A lot of us do look normal and act normal and appear totally well.   It's hard to decide when to tell and not to tell. 
There Is Always Hope

Veteran Member

Date Joined Mar 2010
Total Posts : 2470
   Posted 8/21/2010 5:12 AM (GMT -7)   
Hi Mel,

I'm like you- I like doing for myself and will not ask for help unless it is absolutely necessary. I look healthy too, I am very attentive to my physical appearance so even when I tell people I have RA they tend to treat me as if I just said I have a hang nail.
I've had this for going on 3 years. In my experience I have learned people don't want to hear about it. If they act like they do they totally don't get it and end up saying things that offend you or make you feel bad about yourself. Even my family doesn't get it.

I am just thankful that MTX got me in a place where I can do everything I have to do again. When I presented I was so bad my husband had to carry me up & down the porch steps so I could go to my almost daily doctor and blood work appointments. I was a prisoner in a recliner chair for the rest of the day. My hands were so useless and I had such a lack of range of motion I couldn't even bring my pills to my mouth. A cup of water might as well been a 1000 lb. weight. It was very humbling.

Not sure what to tell you to do. Sometimes I think I really suffer at home because I never made a big deal about my RA after I got "better" and so everyone assumes I'm the same as I was pre RA. I'm not. I may do the things I used to do but not without pain and fatigue.

Regular Member

Date Joined Jul 2010
Total Posts : 297
   Posted 8/22/2010 3:28 PM (GMT -7)   
Believe me, you won't become "poor Mel", rather, knowing how ignorant most people seem to be, you'll be "hypochondriac Mel" or "Mel-thinks-arthritis-is-serious-but-i-have-it-in-my-shoulder-and-i'm-fine"! At least that's what I find, with the vast majority of ignorant people. Some people, fortunately, are more enlightened :)

Unless of course, they're a good friend, and you have the time/opportunity tell them you have an auto-immune disorder, and explain that the treatment can be as harsh as the disease, given MTX is basically chemotherapy. I seem to have assumed you have RA here, but I just noticed you didn't say!

Due to being constantly so worn-down, I use a hell-of-a-lot of products in order to stay looking good, and people naturally assume you cannot simultaneously feel like the world is falling in on you, while looking so darn good. It's a curse ;)

Take care and feel better,


"do you tell people in your life about your condition?"

My answer would be generally no, unless I physically can't do something and need to explain why. Almost all my friends know, and i'ts surprising to me when I realise I haven't told someone, and I make a comment about it - or whip out an MTX syringe and their jaw drops. I feel like punching people when they ask me "where is it? [the arthritis]", though.
21, Male, England.
Dx: Psoriatic Arthritis, Chronic Back Pain, Dyspraxia
Rx: 25mg Methotrexate Sub-Cut Injection & 50mg Etanercept (Enbrel) Sub-Cut Injection

Oh, and plenty of Tramadol, Codeine, Diclofenac, Dihydrocodeine, Paracetamol, Diphenhydramine, and scotch

Contact: jabutler // burnley219 (a) (Anti-spam)

morning joy
Regular Member

Date Joined Aug 2010
Total Posts : 23
   Posted 8/22/2010 8:54 PM (GMT -7)   
Hi Nel, That is a hard one. If people look at me they can't tell I have RA. When I walk, however one can tell something is not right. Here in the US we have absentee voting. That makes it easier for me because I am also totally blind. I don't like to tell people about the RA unless I have to. I also can't stand anyone feeling sorry for me. Good luck and Take care

Veteran Member

Date Joined Sep 2008
Total Posts : 1670
   Posted 8/22/2010 9:10 PM (GMT -7)   
It is hard, Mel.
I've found I had to be honest with my bosses at work, especially as each year I seem to need great chunks of time off to accomodate flares. They have both been extremily good about it. With my classes I tend to keep quiet, if I wear my wrist splints on a bad wrist day, I just say its carpel tunnel, everyone can relate to that.
You find you listen to endless stories about sore fingers or ankles otherwise. People just don't get it.
My extended family found out in a big way with my last flare because I was just so ill and its taken me ages to recover, but I don't dwell on it. Same with my close family, if I'm cranky they tend to put it down to pain.
I'd tell your room mates the basics, I have a chronic disease, causes pain and tiredness, meds are a bit heavy to deal with. Just keep it light and fluffy, then brush off any unwanted attention.
Thats what I'd do. Otherwise they'll think you're lazy or a bit whacky. So hard to find that balance isn't it?
Best wishes, golitho

Veteran Member

Date Joined Mar 2006
Total Posts : 1354
   Posted 8/22/2010 9:16 PM (GMT -7)   
Hi Mel,
It is hard isnt it - do you not tell people for the unwanted pity or do you tell them so they dont expect too much from you.
I tend to tell people who I think will be the type that want too much from me as then they only get from me what I can give and hopefully understand why.
You waited one hour to vote, you poor thing, I walked in and out - thank heavens. and here's hoping we dont have to vote again rolleyes .
Take care Mel.
Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Humira
Bowel Resection Sept. 07
Forum Moderator - Rheumatoid Arthritis

Regular Member

Date Joined Aug 2010
Total Posts : 49
   Posted 8/23/2010 5:19 AM (GMT -7)   
Hey guys, thanks for the advice. Much appreciated, believe me. I'm so excited that I found this site... but I digress...

I've decided to tell my colleague (the two I'll be sharing the new office space with) the light and fluffy version (thanks for the tip, golitho). It's my style. Agreed, Jo: do not want or need the unwanted pity, nor the

thanks Jay, you're response not only enlightened me (hadn't hit "hypochondriac Mel" just yet, but maybe that's because I haven't shared with many people yet and I'm new to the frey so to speak) but also made me laugh ("what a curse" haha... I look just like the next person in my office & I certainly love my concealer).

SydneyJo: yeah, wasn't happy and if we do have to go on this merry-go-round ride again, I'm going to pick a different time of day (on the way home from my son's soccer game wasn't the best time to go I think in hindsight lol).

Weary, I'm very interested to hear about MTX "getting you to a place where you can do everything you have to do again". How long did it take to make a difference?

Veteran Member

Date Joined Mar 2010
Total Posts : 2470
   Posted 8/23/2010 7:47 AM (GMT -7)   

I was on MTX for at least 8 weeks with absolutely no relief. I was also taking prednisone at various doses.
I changed doctors and my new doctor told me to take 40 mgs. of prednisone daily.
Mel- a miracle took place! Just like how I went to bed an extraordinaily healthy woman and woke up an invalid- the day after I started the 40 mgs. of prednisone I woke up and I wasn't in that God-awful pain where I didn't want to move a centimeter. I was able to stand up and walk on my own instead of being yanked up and led slowly by the arm!
The doctor says the high dose of prednisone triggered my immune system to calm down. I stayed on that dose for several months and than it was a very long, slow taper off the prednisone. I had been out on medical leave from work for close to 3 months and I was able to return to work 3 weeks after the first 40 mgs. of prednisone was taken. Granted- it was a little too soon but I was anxious to be back in my routine- I am a "worker". My boss was also anxious to have me back. I was extremely fatigued at the end of my day.
In any event- I am one of the lucky one's who responds well to meds. I wish that everyone could be this way. All the best to you that you will be a lucky one too!

Regular Member

Date Joined Aug 2010
Total Posts : 49
   Posted 9/2/2010 4:28 AM (GMT -7)   
Weary, your advice has given me hope.

I'm newly diagnosed. I'm sure you guys can remember what it was like when you were first diagnosed. It's overwhelming, a bit scary (once you get over the shock - I don't think it really sunk in for a good couple of weeks) and not just a little despairing when you realise what you wanted your life to look like isn't necessarily going to be what you believed it was going to be.

Being newly diagnosed, of course, means I'm in pain. Lots of it. Because if I hadn't been in pain, then I wouldn't have gone to the doctor with my arm's length notes in hand, in tears. Years of "sciatica" (six in actual fact) had meant being in pain was a part of everyday life already to a varying degree depending on the day. But this pain, this overwhelming pain, this was new.

So, lots of pain, finally a diagnoses, I go through all the emotions (and I'm sure I have yet to experience even more), onto the meds... hope is building.... Nothing.

I pull back a little on the inflammatories and painkillers every now and then so I can measure whether the MTX and/or prednisone my doc has me on has made any difference and, so far, nothing. I would be lying if that wasn't just a little disappointing and disheartening.

So, Weary, your story above has given me hope! Perhaps I could suggest to my doctor (in very much a "it was all your idea what a fabulous doctor you are (now give me what I want)" kind of way!)? Or, of course, he could suggest I try something else. He did say that what he was trying out on me was a "middle of the road" treatment (not the most, nor the least, aggressive).

Anyway, once again, it's so wonderful to "speak" with others who truly understand what it's like.

Oh, and it's my birthday tomorrow! (so I'll have to change my sig tomorrow! hehe) I'm celebrating this year! Woo!

Regular Member

Date Joined Jul 2010
Total Posts : 297
   Posted 9/2/2010 7:17 AM (GMT -7)   
turn nono turn nono turn nono turn nono turn nono


Veteran Member

Date Joined Mar 2010
Total Posts : 2470
   Posted 9/2/2010 9:49 AM (GMT -7)   
HAPPY BIRTHDAY MEL!!!!! Hope it's a good one!

Regular Member

Date Joined Jul 2010
Total Posts : 297
   Posted 9/2/2010 1:53 PM (GMT -7)   
copy cat!
21, Male, England.
Dx: Psoriatic Arthritis, Fibromyalgia, Dyspraxia
Rx: 50mg Etanercept (Enbrel) Sub-Cut Injection, 7.5mg MTX, 25mg Amitriptyline

Oh, and plenty of Tramadol, Dihydrocodeine, Domperidone, Hydroxyzine, and Scotch

Contact: jabutler // burnley219 (at) (Anti-spam)
Feel free to contact me for any reason, unless you're in sales!

New Member

Date Joined Sep 2010
Total Posts : 1
   Posted 9/2/2010 9:01 PM (GMT -7)   
My heart goes out to you. I also was secretive for years to obtain and keep employment. At 45 went out on disability with hands that had no strength or flexibility. knees, feet hurt most of the time. Once away from stress things got better but of course people avoid you seeing the disfigurement. Hang in there and keep an optimistic attitude. Many of us with this ugly affliction.

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 9/3/2010 2:47 AM (GMT -7)   
Mel, this is slightly off-topic, but next time there's an election, see if you can vote early, or by post. These systems are in place to help ill people like us, and we are entitled to use them.

It makes life much easier not to have to queue up for so long :-).

Ivy (another Australian, popping in from the Crohn's forum).
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Nana Monster
Veteran Member

Date Joined Jul 2009
Total Posts : 957
   Posted 9/6/2010 10:35 PM (GMT -7)   
Hi Mel and Happy Birthday,
I understand what it's like to look "normal" and be in soooo much pain. For me it started around age 7 and I
remember vividly my feet hurting like heck in school. When I was a teenager it took over my legs and now I
have it in most joints, including my ears (strange place, but true). I was finally diagnosed when I was 25 and
my ex thought I was making up the pain as some days I could barely walk. I'm now 56 and still going. Some
days it's hard but I just take it one day at a time. I work in a dishroom of a 200 bed nursing home and have
a very physical job but I can still outwork the 16 year olds. My Grandaughter is complaining of her legs hurting
and I hope she doesn't have this as I know how bad it can get. My nephew was diagnosed at 2 yrs old and my
Dad was about 7 when his started. You may find this runs in families, especially the early onset stuff. People look
at you like you're nuts when you tell them that you've hurt for longer than they've been alive!!!
Good luck and I hope you feel better
Nana Monster

New Member

Date Joined Sep 2010
Total Posts : 13
   Posted 9/7/2010 2:08 AM (GMT -7)   
Nana Monster, can I ask you more about your ear pain? I've been having horrible weird ear pain and I did wonder if it was somehow related to RA.
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