Hi. I haven't posted in a while. I am upset as I have been feeling down about my symptoms. I have my good days and bad days, as most of us do. But, when I am feeling good, I can shop and act "up", while on others, I can barely act "normal". My family, especially my grown daughter, gets very upset about this. Yesterday she told me via FB, that I was "mentally ill" and needed help due to my depression. She also told me that if I can shop, I should get a job, volunteer and "get a life". She said she hopes I "get help". This was all due to the fact that I had been feeling down the previous time I saw her. I got mad (which I should not have) and told her maybe she would get Sjogren's someday and would understand me a little better (which I also should not have said, in retrospect). Have any of you had any comments like these from your loved ones, especially a daughter who you are very close to? I am feeling very bad this morning. I am thinking maybe she is right in that I need to pull myself out of this and that maybe I do need to "get a life". I do try really hard to act happy, even when I'm feeling badly, around many of those I love, just so I don't get comments like this. Help! Am I mentally ill? I do get depressed about Sjogren's and my son who recently moved away. I was a stay-at-home Mom for many years before I got this and think I'm dealing with so many things that I don't know what is causing my constant "feeling like I have to cry" feeling. Sorry to dump all this on you guys. I know it's a lot. Any words of wisdom would be appreciated.
Janny:
I haven't had anyone tell me ...to my face...what your daughter "posted on fb"...but I can see their faces...and I can hear the changing of subjects.
You don't say your age...but note your son moving away. Could you have hit menopause age/stage? I mean could your mood have shifted due to something else? I am asking, as there are a myriad of reasons you could be depressed or just down in the dumps. Don't think "mentally ill" due to a suggestion by an irritated family member. Please. People think I should be depressed..but I am not. If anything I get bored...or miss doing things I once did. But I'm old. So I keep that in my mind. Big difference between your situation and my life.
As to working vs. shopping: gads...I never know from day to day what kind of day I'll have. I can no longer work due to that physical actuality.
I honestly believe I would question why my daughter posted this info on fb. Haven't a clue as to how many friends she has who would have read this...or if you have same friends on fb. This would make me so uncomfortable and unhappy. That is just me.
I can "hear" you are upset. I am saying that as when something upsets me (Now..post SjS dx) I tend to obsess over whatever i'm upset over. It passes..but I do know I am more emotional now. I don't know if it is related to having a chronic illness or my age. Whatever, I understand.
Good luck...go shopping...or do whatever you want to do today...and tomorrow...etc.
Sjoldier on SjS Sjoldier.
Sjoldier c3
Hang in there Janny. I have been fighting depression for way too long myself. There many days I put on a smiley face to make the people around me happy.....not for myself. There are very few people that get this....except for those of us who live with it everyday. Be happy with and take advantage of every "good" day you are given...and do the things you like to do. Take care of yourself :)
CCCourt1942, yes, menopause could be part of my depression. I am 57, so it's been a few years. I know my menopause and Sjogren's both hit me at the exact same time, so it's hard to say what is making my depression worse. Oh, and my daughter did have the good sense to send me a private message on FB. The argument actually began over something very minor and she took it to the next level. Thank you for the kind words. You don't know how much I need them today. And lorigacc, thank you, also, for sharing your depression, so I know I'm not alone. I actually did go to a shrink a year ago and told him about my on and off depression. He told me since I had Sjogren's and am extremely dry (everything!) that most of the anti-depressants would cause me to be ever drier and make my eyes worse. So, I sort of gave up on that idea. But, I did not think it was appropriate or compassionate for my own daughter to call me "mentally ill" and tell me to get a job (which I did try and had to quit again because my eyes were so bad I would go to my car and cry) and "get a life". I guess it hurt to bad, too, since I would expect her to be a little compassionate towards me, knowing all I have been through the past few years with this disease. I truly don't think family or friends can understand what this even does to a person emotionally. You guys are blessings!
It can be so easy to get depressed with this disease. Especially because each day is different and you don't know how you will feel day to day. Plus the fact that our lives have changed and we are more limited.
But please don't underestimate the power of antidepressants. They may be a bit drying but not like an antihistamine drying. The benefits far outweigh the dry issues. If you notice in our profiles, a lot of us take antidepressants. In my case, Prozac helped tremendously with not only my mood but also my chronic pain. It was really a lifesaver!
Hope you can feel better soon.
Liz D.
"what Liz said" :)
You know...she is absolutely correct. This happened when I only had dry eyes (which I ignored) . During menopause...and probably longer than after my ovaries shriveled...I had migraines. I was told they were hormonally caused and I was lucky
as they would disappear after menopause. The treatment was an antidepressant and blood pressure medication. I've long ago forgotten what the uptake/downtake action it was doing to my body...and it worked (I guess) as I had fewer migraines. I still had them tho. So finally, the headaches stop. Like I had snapped my fingers. I was afraid to stop taking my meds. I took a reduced dosage of the antidepressant for about 3 years...and took the blood pressure med (1/2 of it) like every other day. I eventually stopped all of it. SOOOOOOOOOOOOOOOOOOOOOO.............I very well have gone thru depression at some point. I have not taken the meds in oh geez....well over a decade...likely closer to 2 decades. But I'm 74.
This is why it's so wonderful to be a part of Sjogren's World Forum. So many people with like experiences contribute...and from which you can draw....or discuss with your dr.
And...so glad your dtr sent private message. :)
ccc
janny its difficult to deal with people who think that u are not really sick if u dont have your sickness printed on your face,or if u do not have visible signs of your illnness. nobody want problems, so even among best friends its rare to find some one who bothers or who wants to understand. when somebody looks at me and say that i look fine its bec they dont want to hear my worries or my fear for the future. if i say that i lost some pounds bec i cannot eat like before, they replay that im lucky bec they woud love to lose weight so easily. if i say that i cannot stay in the sun, they say thats why u have a beautiful skin,if i say that im tired they say ohh u never slept so much. there is always an answer that makes me crazy! people dont want to hear problems from somebody they love because if they assumed that we are ill they would have to worry and i must find somebody who wants to be worried...i dont have a family, no brothers and sisters, im divorced since many years and my only son died when he was 17 . i m alone but i was sure that i had good friends: since i have this sickness i wonder if its true, my life is very different from their life. i decided that every day i must find at least one little thing that i like, be kind to u, love yourself, ciao from italy
Oh, you all have made me feel so much better! You guys are truly wonderful :). Liz D.--I will definitely take your advice about the antidepressants. I think I will try a different doctor. And cccourt1942, thank you for your story of how AD's helped you. You guys have inspired me to try to take control of this thing and deal with it (although I still think my daughter could have been much kinder about the whole thing--I'm not "mentally ill". If so, she sure lets me babysit with my mental illness quite a bit!!). Bluegardenia, your advice to find one thing every day that will make me happy is something I have already started. I took a walk with my husband and two doxies and had a delicious smoothie (great for the mouth!). I thank God for all of you. I was in such a state this morning that I didn't think I could make it through the day. You guys made it bearable. Bless all of you.
I get what you are saying and I get what other people including friends and kids are thinking. When my hubby was ill and I was ill at the same time--- I took care of him for years in spite of feeling like I would drop dead at times. After hubby passed away it occurred to me that my kids didn't seem to get what was going on with me. I went over to one of the boys and let him know that since 'dad" was gone you boys need to know what is going on with me as I may need attention at times. I could tell very soon that he didn't get it and that it seems kids were thinking that I am feeling sorry for myself.
Boy, did I get mad and said a few things and I did not feel guilty about it. I did talk to another son later and he said that it is so confusing because they can't tell when I am really sick. The bottom line to this is I didn't complain to them over the years cause dad was the one that was sick and dying. Soooo, they have no notion of what to think of me. The other thing that comes up is that with all these autoimmune diseases we can feel like we are going to vomit, terrible fatigue, hardly walk, but we have the perseverance to push on through this stuff and tough it out. If we didn't do this we would have no life at all. I worked at my job feeling extremely ill at times and always felt ill every day.
All of us know that on our "good" days, which are not really all that good, we are able to push on through shopping, doc appointments, going out to eat and chatting some with friends. We can act pretty normal and healthy. The people should see us for the next week when we sometimes fall asleep in our clothes in the recliner and just can't get up for hours. The days that it takes to recover after those "normal" days are not seen by many of our friends and relatives except for spouses, etc.
I have to admit that much of the time I don't always understand what is happening to me and often have
great trouble describing to the docs how I feel. Soooo, yes, I get it and it makes me mad and unhappy at the same time. I don't know what to do about it as it is so hard to explain. I have been thinking about this a lot and have thought that maybe I need to make a list of the physical problems that I deal with from head to toe including the vaginal dryness, colon issues, etc. Pardon me but no one sees the problems this can cause us. We have so many health isues that can put us down that it is unbelievable even to us at times. So often it is just the misery and fatigue of illness that affects us and it is not depression. If anyone can come up with a good plan let me know. I tell my doctor that at my age I am an illness or fall away from assistive living and that in itself is depressing. So I try not to fall and try not to dwell on what could happen. So as usual just have to keep on going and doing the best we can. Irish
Irish, I am so sorry about your husband. But, yes, I don't think our children understand all of the issues we have. I, like you, don't go around complaining to them. I want them to be happy and not worry too much about me. I actually have a son who, when on vacation with his live-in girlfriend, scoffed and rolled his eyes, when I tried to explain what Sjogren's was to her. This only happened because she had gotten back from a hike and took my last Gatorade (I know it's not the best--but sometimes on vacation, when I can't make my smoothies, this is all that helps my mouth!) and I laughed and said "you better appreciate that since it's my last one and I really need it". So, then I felt I had to explain. I only went into the mouth and eye dryness issues, too. I honestly think sometimes that my grown children think I am making all of this up. Thank heavens I do still have a husband who has been to doctor appointments with me who somewhat understand this.
I do however have 3 sisters, none of whom care or understand what I am going through. They are all healthy-as-a-horse . One of them plans picnics, etc. and then when I sometimes have to cancel at the last minute as I don't feel well, she gets mad and won't speak to me for a month! So, I have put up with a lot from family members. Two of them actually work in health care--one is an RN!
I know what you mean about explaining symptoms. I tell my husband I feel like I have AIDS, even though, of course, I have no idea what that feels like. It just means completely and utterly fatigued and worn down, barely able to function and move. But, then three days later, I can feel relatively good all day (except for the terrible dryness, which never leaves). People do not understand and it can get so frustrating. I do notice that I can only do things outside of the house, or which cause me stress (social gatherings, etc.) about twice a week, or I will get my "AIDS" feeling. (I have explained this to my daughter, hence my getting so upset when she told me to "get a job, volunteer" and "get a life"!)
But, I am sorry for all you have been through. Yes, try not to dwell on the "what-ifs" as that will only give you anxiety. It is always hard, though, not to worry about what may be coming in the future. But we have to try. I hope your sons are able to give you some compassion and understanding. You will be in my prayers. Janny
Janny,
Do you not take/use products for dryness? Pilocarpine, Evoxac, Cevimiline (sp?) for oral cavity? Restasis for eyes?
Sjoldier c3
Hi Janny,
I think we can all relate to what you're going through. Often the people who should care the most don't seem to or want to understand at all.
Depression is very common with AI illnesses, so it is definitely worth talking to your GP about it.
Also, please ask for a full Thyroid check as undiagnosed Thyroid issues can make these symptoms worse.
Might be worth passing on the Spoon Theory to your family.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Wishing you all the best.
Yes, ccccourt1942, I do take Salagen (used to take Evoxac until my insurance company insisted I switch) and have all my tear ducts cauterized, which is very helpful, but not perfect. The Salagen is not very helpful to me anymore. It used to be, but maybe my body has gotten used to it. I also take pilocarpine and an occasional clonazepam to help me sleep. But, nothing helps the crushing body aches and fatigue I get. I have tried everything, so I sort of live on the edge, never knowing when it will flare up again. But, I do have my good days, too. So, on those days, I try to "go like the energizer bunny" LOL!
Aussie mum, I don't know that I've ever had a full thyroid check. Good idea and I will definitely do that. Thank you for reminding me of the "Spoon Theory". I know I saw that once a long time ago and forgot about it. I will definitely email that to some family members. Thank you! I am also going to definitely ask about an anti-depressant next time, too.
I have to add that my kids are good to me. lol I make it sound like they are nasty, but they are not. They just don't get it and the problem with our autoimmune is that is doesn't look so bad but it sure feels lousy.
I have to add that we probably all have the times when we have the joint pain or other pains that make us really miserable. I have been there and done that but don't seem to be around other people when I am like that. Also, like most of us Sjoggies, I am very good at covering up or hiding how I feel. I think most of us do these autoimatically because we have been ill for so many years and have had to work at homes and at jobs. We have learned to just push ourselves to get through the day and collapse when we get home.
My one wish is that there would be some way to be able to get across to our friends and relatives how we feel without sounding like a whiner. I went to a small class reunion a few weeks ago and I was really sideswiped by a guy I graduated with. He had been drinking a little too much and he asked me why I looked the way I did. He said I saw you before (like several years ago) and you have changed. He sort of went on and on and I just wanted to shut him up so I said that I was getting old. He was referring to the fact that I did look like heck. I have aged a whole bunch since hubby passed away and have had more health issues so , yes, I do look pretty gray and wrinkled.
Everyone standing around us was looking so I didn't want to get into the health issues---he wouldn't have remembered the info anyway. The sad thing is that after all these years someone noticed that I didn't look good and I didn't want them too. We can't win can we.lol Irish
sorry things aren't going well with your daughter. It's true that people don't understand unless they have an auto immune disease. And, some people can be so rude and clueless. I once had a doctor tell me I had depression when I had a full blown case of colitis. He said it was IBS and depression. When I changed doctors and found out what it was, I wrote him a scathing letter.
Don't let anyone else convince you that something is in your head. If you are sometimes feeling bad and sometimes feeling better, that doesn't mean you are mentally ill. You have a disease. I know I have good days and bad days and have no idea why it comes and goes. If you think you might have depression, read up about it and get checked out. Low thyroid and menopause can also cause moodiness. They have blood tests for those.
I hope things get better soon.
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!
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".
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
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*
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!!