Anyone Have People Who Tell Them They Need to Get A Life!!

[MAT51]

Hi - ditto to what others here have said -I think sharing about SJS and its impact on us is one of the hardest things I've had to do. And yet, when I was diagnosed five years ago, with RA - my friends and family broadly understood. I found a little Italian film with subtitles about this - which I think is lovely. But I sent it to my boys (3 young adult sons) acid I don't have a clue if they have watched it or not - or whether they've researched Sjogren's or not either. I think the fact that it mainly affects women who are mostly 40-60 (although I actually think I've had it for much, much longer than this) and is about drying up everywhere, is quite alienating and hard to explain to our children really. I think the film conveys this quite well.

http://www.tulipanidisetanera.rai.it/dl/portali/site/articolo/ContentItem-09f9f60f-1649-4009-a0bb-63af6284ef8f.html

I tried antidepressants and anti convulsants but they all made my dryness much worse and also made my disequilibrium/ dizziness worse too. Hard for me to get off them but I had to. Best of luck though - I know many find them very helpful. I plumped for talking therapy in the end and found a counsellor who listened to me and I worked historic stuff out with her help. Understanding how my Sjogren's has come about has helped me come to terms with my autoimmunity and I don't find I need to explain the endless fatigue and use of eye drops to people so much - I just tell them I have a rare multisystem autoimmune disease similar to MS and they tend just to shut-up or accept that this isn't so easy! But I was only diagnosed a month ago by lip biopsy  and have been undergoing tests to rule out lymphoma and establish probable brain involvement so I tell my friends and family this too. This way they know it's not just about my age and stage or a figment of my imagination!

[warmwaters]

Just another variation on how I've been "educating" friends and family. I use to be one of those folks who would go ahead and attend the family birthday party even though I'd had surgery two days before, or take on that really tough task at work that no one else would do.  But I can't do that anymore because I have no idea what tomorrow will be like. 

So I've started saying to people, in a joking tone "I'd like to, but understand, I'm unreliable".  It applies to so many things - can you come to this event in two weeks?  "I'd like to, but understand, I'm unreliable". Can you take on this task? Sure, but I don't know for sure if I can complete it on time, because I'm unreliable.  Now, I always go on to explain that my health varies A LOT, and there aremany things I would like to do, but I'm not sure if I can do them on any particular day.

It's hard to get people to understand what we're going through, but I find this particular explanation can be very helpful.  It took me a long time to be able to say this, because I used to always say "Sure, I can do that".

[Carolina]

I think that family members have the hardest time accepting the reality of the health conditions that the mother has.

"You take too many medications, that's the problem." comes from my son, who is a doctor. Every medication I take is necessary, carefully considered.

"You need to exercise more, you're just in poor condition and 'weak'", Comes from my husband, a PhD Immunologist. I am strong and exercise as much as possible, and always have.

I don't get "get a life" because I didn't develop these health problems until I was in my 60's and had had a very active and eventful life.  But I did 'get over yourself', maybe not in so many words, but the intention was there.

Now I think that I am virtually a cripple,wearing braces on my legs, that I have Primary Immune Deficiency and receive monthly infusions that cost $20K each, it is clear to everyone in my family that I am doing the very best I can.

I think that until I deteriorated to this level, and I was 'on my way down' depressed and in pain, I sought understanding and support from my close family members.  Talking about my health and situation with them was a mistake.  They cannot bear my weakness and neediness. 

This forum is where I get what I cannot from my close family members.

Hugs,  Elaine

[DeadGirl75]

I'm sorry you're experiencing this. I'm not sure how long you've had this, but I'm finding that educating my family who do not have the same issues as I do help. However, there are some people that will never understand and that's simply because they don't want to. This isn't your fault, the blame lies solely at their feet. As for putting your business out on facebook, perhaps putting your daughter on restricted so that she can't see posts unless you make them public will help. I've had to do that with family and it helps. Ultimately, I had to step away from people who were toxic to my life. I love them from a distance, but it's too much to have them close. I hope this isn't the case with your daughter and she'll come around. *Hugs*

[janny]

Thank you all for responding. You have made me feel so much better. Carolina, you are most certainly in my prayers. You are right in that this is a wonderful spot to get support. I think everyone on this board is so compassionate and helpful. Hugs right back to you!

Warmwaters, I absolutely love, love the response you give to those who invite you to do something. I hope you don't mind if I borrow it, because that is going to be my answer now every time someone asks me to do something!!