Bonded by Chronic Illness -

[dbab]

This past Saturday, my husband and I did just a few minutes of moving boxes around in the garage.  He's got a few law books in there (a 'few' is an understatement) that he is needing to do something with.  Well I was in and out of the sun for a limited time but of course I got a reaction and broke out in my SCLE rash.  I was quite self-conscious knowing we were meeting up with a couple that we are friends with on Sunday.  So of course of Sunday, I really tried my best to cover it but this type of rash always seems to bleed (figuratively) through.

Well when we met up with our friends on Sunday, I felt like I had to apologize for my appearance right away and I explained to the wife about my lupus and Sjogren's and that the rashes were one of those ugh side effects of the diseases.  Of course the wife said she barely noticed although she may have just have been being nice about it.lol  She then had a lot of questions for me which at first I felt kind of uncomfortable about... I don't like people to think I whine about what I go through or make my disease the focus of conversations so I just kind of not talk about it but she wanted to know all about it.  A few minutes later, she said that she was relieved that I told her that I was sick because she was comfortable enough to tell me that she had a chronic illness too.  An INVISIBLE one at that... just like me.  By looking at her, I would never be able to tell.  But she told me that she has Job's Syndrome.  She told me all of what she has gone through in her life and I seriously wanted to cry.  We instantly formed a bond right there. 

We have been friends' for a year and neither one of us knew we were sick because we were never that close of friends (we were friends by default because our husbands were friends with each other first)... but that has all changed now!

[Katybarstool]

Dbab

So, your rash has made you a new friend! Got to take all the good you can out of having a chronic disease. I hope your rash has settled down now, and that you don't feel exhausted after all that work.

Kathyx

[Patze]

Awe Dbab, that is so neat!!  I'm so glad that is worked out for you so well!

Good luck with the rash, and I hope that it settles down for you soon.

Take care of yourself -

Patze

[One and only]

I try to mask my illness the best way I can, I smile when I feel like my nervous system is doing its best to stop my heart, people tell me I look good despite the severe weight loss, and when I look in the mirrow, I wonder if there looking at the same person lookingback at me in the mirrow,, glad you found another person to bond with,, guess this is a good meaning of the phrase,, misery loves company

[jordozmom]

Well that is fantastic!  I often think that women just keep too much inside and I'm always tickled when women get to talking and find out how much they really have in common.  We women suffer in silence WAY too much!

As terrible as it sounds, I've considered myself "lucky" to have a mother and a best friend who both have AI diseases (Mom has Scleroderma and best friend has RA) so I have people around me who totally understand what I'm going through.  Which sort of makes up for the friends and co-workers who don't get it and think I should just "suck it up"!

But it is nice to talk to someone about my disease who knows exactly what I'm talking about.  We are on some of the same meds with the same side effects, and when I say I'm "tired" or "not feeling well" they know what I mean!!!  They don't get upset when plans need to be changed or canceled and they understand the pain and the need for rest.

[Chickpea]

That's wonderful, Dbab.  If you hadn't had the rash you would probably have continued to socialise, never realising what a struggle it was for both of you just to sit and chat and smile.  Lucky rash!

It might seem an odd thing to say but something good that's come out of being a wheelchair-user is that those 'invisible' days are over.  The same applies to having tremors which are pretty visible too.  Now people often stop me when I'm trundling about and ask me how I am, for information about my condition, or just to chat. 

It took me a while to get used to it because I'm quite a shy and private person, but I've realised that people welcome the opportunity to talk to someone who is clearly completely unthreatening.  Maybe it helps them get their lives in perspective too?  It's probably different for each person but it helps me to find meaning in my 'new' life.

Take care - Chickpea

[dbab]

I agree, it definitely feels good to have that feeling that someone you know 'knows' or can empathize.  On a similar note, the support groups around here have fizzled out which I'm really bummed about.  If I had the time (I work full-time), I would organize one myself or volunteer to get one going.  I really like the support groups, they have helped in the past.