Help! My family/ friends don't understand .

[kerihealth]

Hi! New to group. Dx sjogrens with RA 2013. Tried to not think about it, but I also got mono. This was hard to work through, these last 6 months my symptoms are really bad. I work and try to stay up until 7pm . I don't want to do anything outside right now . In wisconsin the winter here below0 temps. I seem to be changing , my family doesn't understand why I'm so tired. My friends have no idea what my disease is. I used to be so different , lots of energy. I'm only 40. Soo happy to talk to people who understand . Any tips? Kerihealth

[Carolina]

Hi, Keri,

Don't expect them to understand, Keri. 

They don't have to understand, but they do have to honor your needs to the best of their ability.

And this means that you will have to learn a great deal about yourself, in order to ask for what you want from them.   

And that you will have to learn to live without understanding from others.  It's very hard at first. 

I actually think most of the time we BELIEVE that others understand us, when actually they don't.  It's just that we all sort of co-exist comfortably, and it seems like mutual understanding.

It isn't until we really have a big change, and the comfortable co-existence stops that we come face to face with the fact that often 'understanding' is an illusion.

Here you will find many that understand exactly what you are experiencing, and will help you sort out ways to manage things, and ways to talk to professionals, and ways to help those around you give you what you need.

And many of us get what we need to a great extent here.  That is ok.  No one can be everything to another person.  We all get what we need from several sources.

And it isn't just family and friends who don't understand.

Many doctors do not understand, actually.  That can be the most painful.  To have a doctor flat out deny the reality of our condition(s). 

So, relax, this is a long journey.  And I for one try to enjoy it as much as I can.  I find wit and wisdom and humor here.  And I find my eyes fill with tears, and my fists can clench in anger at how hard some of us have to struggle to survive.  But mostly, I find peace of mind here.

Patience, persistence and acceptance.

Hugs,  Elaine (aka Carolina)

[slccom]

And the "Spoon theory" from butyoudontlooksick. That helps explain fatigue.

Are you getting any treatment at all?

Hugs, Sharon

[finallyadx]

Kerihealth - welcome to the board.  Sorry to hear about the lack of support and understanding from your family/friends.  I have found somewhat the same in my life since being diagnosed in January of last year.

I have found some family/friends are truly great while others do not seem to care or understand.  I try not to talk about how I feel most days but if I have real issues or concerns or am just feeling down from the loss of the life I once knew before sjogrens, I come here to vent, ask questions and get some advice. 

I agree with Carolina - try to embrace your journey and do the best you can.  It is a difficult journey filled with tears, sadness, frustration and a sense of grief at times but it can also be filled with a sense of accomplishment on those days when you can get things done and you can do everything you set out to do.  My norm has changed several times and I have good days and I have days where I just want to give up. 

I also agree with Sharon - the spoon theory is a great article to share with folks to try to help them understand what it is you deal with each day. 

Some people will "come around" and start to be more understanding and some won't.  Try to take each with stride.

I also am curious if you are on any medications at all to try to alleviate some of the symptoms?  I am on plaquenil and have found some relief since being on it with fatigue and pain.  No medication is specifically for sjogrens and so it could take some trial and error on yours/your rheumatologists part to try to figure out what may/may not help you.

Hope you can find some relief some.

Sending positive thoughts and prayers your way.

[kerihealth]

Thanks for all the kind words. I guess I'm changing into a whole different person, then before the dx. I was much more fun, that's for sure! I only have energy to work right now. avoiding friends at times. When I was dx I was handed a pamphlet and told I have to start plaquinal. I'm having my first real flare up. My vision is blurry right eye with burning pain. I had my right hip injected for RA , limping from pain.... So tired ! I see people suffering worse than me. I need to focus on positive things. I can say for sure that it makes me a better RN. Tons of empathy for people suffering from any disease.  I see a rhuemy dr and autoimmune dr. I also take sulfasalazine tabs otherwise I have hives all over body.  Thanks again new friends!

[heidiaj]

Carolina's post is comprehensive and touchingly real.  I was a Human Resources Director for 24 years and thrived on activities which involved enjoying people.  Now I spend most of my time at home, going out mostly just to go to doctor's appointments.  Family and friends have given various levels of empathy and support over the 6+ years since I presented with agranulocytosis in an ER and was told immediately that I would undergo a bone marrow biopsy.  I have since learned that this may well have been the start of my Sjogren's journey, and that there is research which supports a link between agranulocytosis and Sjogren's.

One thing I just did recently was to make up a little bullet point "manifesto" which describes my life with Sjogren's.  I share it with friends & family members that I feel want or need to have a better understanding of what this illness is all about.  Some have expressed heartfelt caring while others have actually said "thank you" for sharing, and that they learned a lot.  It's hard for us to understand, for quite some time.  As we start to, putting it into words for ourselves and those we care about may help in the healing process all around.

[Carolina]

Dear heidlaj,

Still learning every day about conditions:

Agranulocytosis, also known as agranulosis or granulopenia, is an acute condition involving a severe and dangerous leukopenia (lowered white blood cell count), most commonly of neutrophils causing a neutropenia in the circulating blood.[1][2] It represents a severe lack of one major class of infection-fighting white blood cells. People with this condition are at very high risk of serious infections due to their suppressed immune system.

Agranulocytosis may be asymptomatic, or may clinically present with sudden fever, rigors and sore throat. Infection of any organ may be rapidly progressive (e.g., pneumonia, urinary tract infection). Septicemia may also progress rapidly.

http://en.wikipedia.org/wiki/Agranulocytosis

I was a director of Human Resources, too!  And taught HR in a college.   Yes, we used to be in the midst of things for sure.  I could write some amazing stories couldn't we, heidlaj?

Hugs,  Elaine

[heidiaj]

Yes, Elaine...my mother always used to tell me I could write a book....and that was before Sjogren's!!  I have had to learn a lot of medical terminology.  When I went to the ER back in the fall of '07, it was because I woke up with a severe sore throat.  I was a caregiver to both of my parents at the time, so I wanted to get on an antibiotic quickly, and since it was a Sunday, I went to the ER which I normally wouldn't do.  They did blood work and then came back, saying they wanted to do more blood work (because they couldn't believe the results from the first draw).  After that, a doctor came in, put his hand on my knee (I knew I was in trouble then!!), and told me that they were afraid I had leukemia and that they were going to do a bone marrow biopsy.  I was absolutely shocked.  But, as you presented (the definition), they saw my blood work and identified it as evidence of agranulocytosis.  I had 0% neutrophils.  It took them a week to stabilize my blood levels, and it was only after that hospitalization that they found me to have a + RF and SS-A and SS-B antibodies.

The good news...last week I got to see one of the country's most sought-after Sjogren's specialists and FINALLY feel that I'm in good hands!!  But it has taken that long to get proper care and consideration for this illness.

[bloodless]

It helps to also tell them to imagine walking at Disney World or Six Flags all day. That ouch you feel after sitting down and the get back up later is the feeling all your joints have. Then tell them to imagine you have the flu without the cough, but with the muscle aches and pain on top of that. That is what it feels like every day for you. After all your body's immune system is overreacting.

[knik]

You have just put in to words exactly how I feel.  I am new to this forum and recently diagnosed.  I am not the person I used to be and it
is killing me.  Despite being in my early 50's and overweight I have always been very active.  Limber and able go all day.  Not so in the past two years.  My kids have seen me change.  I have explained to them what this all means but I don't think they really "get it".  My husband too.
I feel guilty.  This diagnosis is all new to me....just days.  To have an answer is wonderful, but the reality sucks.  When I cannot get my thoughts together because of the brain fog I feel as though I need to tell everyone what is wrong with me.  I should wear a sign, but I don't want to go around like "poor me".  So glad to find this forum.  Thank you!

[Katybarstool]

Knik, welcome!

If you start your own thread and tell us about yourself, you will get lots more welcomes too.

Kathyx