Dealing with Sjogren's and Reynauds

[Nolli]

I don't know if this is the right place for this, but I figured it was the best bet.

A bit of background:

I'm in my 20s and I've been diagnosed and misdiagnosed with various autoimmune diseases coming up on 5 years now. I'm nowhere as bad as I started, but when I flare it doesn't feel that way. I have no joint damage according to xrays, but I am unable to fully flex my hands and I have visibly swollen joints. My skin changes colors. When I'm stressed or cold my hands and arms will turn a lovely gray-purple due to the Reynauds. My face also alternates between looking like I got a sunburn while wearing sunglasses and normal coloration but scaly and dry. My eyes are often red and irritated as well but they've gotten better and look completely normal some days. When I flare I end up waiting a month for an appointment and I don't have the same symptoms as I did a month ago. So they just draw labs and send me home. I'm not asking for a cure per se (I wouldn't say no though), but symptom management and I have not been very successful thus far. I went through a ton of doctors prior to this one who didn't have any answers or worse told me it was in my head, stress, anxiety etc so I'm attached to the one I have because she doesn't think I'm crazy.

My problem that maybe you guys can help with (I'm not asking for medical advice): How do I fend off patients or coworkers when they give advice when they hear the answer to why my face all the sudden looks red? How do I deal with the "but you don't look sick/you look great," or "you're too young..." comments while being professional? Previously I've just told them I'm already seeing someone or politely tell them I'll look into it and then never do it, but I want them to just treat me like a normal person.

Most of all how do you guys keep going and do you have any tips? I thought that maybe it'd get easier over time, but if anything it has gotten harder since initially I thought it was just temporary...surely modern medicine can fix this... Hope is kind of what has been keeping me going through all of this, but now well I'm not so sure.

[ktwlpn, LPN]

First look for some support, either in real time or on-line. It is really scary to be diagnosed with a chronic disease and it helps to talk to others who are going through that experience too.

It's up to you how much you share with your co-workers. Some people are very private and want their work place to be a place they can go to and forget about those problems for a few hours and others want to bring that with them and make it a part of their day, all day, every day.

You have already learned that your co-workers are not (most of them) appropriate and supportive .After you get some support outside of work you will be able to handle that issues better. If you choose to maintain your privacy your co-workers will eventually get the hint after you blow them off with comments like "oh,yeah I have a thing,-whatever,have you seen the chest x-ray report for resident so and so?" You can claim allergies -that covers lots of issues with your face and eyes. Reactions to makeup, sensitivity to perfumes work ,too.Tinted non-prescription eyeglasses can give you some camo,too

People are generally pretty un-informed about these kind of health issues,I have seen firsthand ."What's wrong with your eyes, did you smoke something today? Hahaha" How many times to you have to hear a remark like that before you go postal, right?

[Nolli]

Thanks, I've been thinking about joining a group online. As far as coworkers go most were professional it was only the odd one out that I had issues with. The patients and families or even people in public are the main advice givers now. Sometimes I just say I have a skin condition and they go on and on about how their great aunt so and so had skin condition xyz and this is what she did. I've been told everything from having faith in god to putting meat on my bones will fix it. I don't mind sharing with people, but the advice and comments drive me up a wall sometimes. To be clear I don't mind them being curious as long its not "OMG what happened to your face!"

[ktwlpn, LPN]

You need to practice some snappy comebacks. It might make you uncomfortable to answer back and shut someone down but they are making you uncomfortable to start with. Don't hesitate to shut them down. Our society is no longer concerned about etiquette, it just infuriates me. Some people just have no class or couth. ANYONE with the nerve to make a comment like "OMG..." deserves to be put in their place firmly and promptly.Ignorance is no excuse for inconsiderate and hurtful remarks.

When someone says something about your face you can reply "It's just temporary but I'm SO SORRY ABOUT YOURS!"

Everyone spends hours on line and they all think they are experts about everything. Why don't they get on and research how to support a friend through these things? I recently overheard a co-worker say to another one who had just come back to work after a miscarriage " It was probably for the best, who knows what would have been wrong with it if it lived to be born, The Lord will give you another". I took her aside and had a LONG talk with her...after I spent about half an hour offering quiet support to the young lady who locked herself in the breakroom in tears over those remarks. Some people will NEVER learn to just SHUT UP....

[silverbat]

I am now in the fun ride of diagnosis search myself and sympathize. I do seem to finally have a good Rheumatologist who must be part blood hound, cause he says he will figure out a diagnosis, if he has to look for needles in haystacks!! LOL.

Hopefully you have a good Dr that will do that to diagnose your ailments so that appropriate treatment can begin and maybe your symptoms will ease. I know there are various treatments available for much of what you describe, just gotta find the ones that work for you.

Not giving medical advice, cause we can't, :) , but here's hoping you find a great DR and a great support system.

I also have an "invisible illness"--Meniere's disease, that while it makes me miserable, does NOT turn me green with purple polka dots so NO one is aware how sick I am cause I may not look at all ill to them, even though I am sick, sick. Very few understand unless they walk a mle in your shoes...

There are MANY who understand your exdperiences and have similar stories. Hang tight and Best wishes........

[determined rn]

I am new here but found your post very relatable...I have lupus, and get some of the same symptoms...I don't disclose my stuff at work but that's just me, however, its getting more advanced and I'm reaching the point where you are....FRUSTRATED. With chronic illnesses that in itself can prevent us from getting better. I agree with the "comeback" suggestion, HOWEVER, Its all in the delivery, and the audience...that's a touchy one. I guess its more about how much you wa t to keep it "hidden"....you could always use heavy duty make up, long sleeve shirts, but it doesn't hide how you're feeling. I guess I don't have much suggestions, but you have my support!