Hello, I was just formally diagnosed with Sjogren's last January and I am having extreme difficulty dealing with the ignorance that people have of this disease.
Everybody from my family, to individuals in the medical profession have insulted me because of my limitations due to this disease. Just yesterday, a family member said to me "people think that you are lazy because you don't work." He is an adult and he has a full time job as a registered nurse! I really want to work and had just been finishing up my second college degree when the symptoms of this disease reared its ugly head.
I feel very hurt, especially from the terrible things that my loved ones say. I am waiting for the Plaquenil to kick in so that maybe I could feel okay to at least work part time. Right this moment as I type, the bottoms of my feet are completely numb! I only slept about 3 hours last night because I am so upset over how I am being treated. I am afraid that this is going to be the beginning of a really big flare! Has anybody had similar experience? I am so sad.
Hi ladydi, sorry to hear that you had to listen to that insenitive and very ignorant remark from your family member. Nurses are suppose to be non-judgemental. I think he needs to re-open some of his books on auto-immune diseases and educate himself. It certainly is difficult for some to understand because usually we don't look sick. ( even though we feel like a train wreck ) The best thing you can do is educate your family on Sjogren's. Hopefully you have at least a couple of good support people in your life. For me it is my husband. The summer before I was diagnosed I thought I was going crazy, I felt so horrible. At one point I even thought maybe it was all psychological. I was afraid to share my vague symptoms with my Dr. because I didn't want her to think I was a hypochondriac. I was diagnosed by chance. I was having migraines and a neurologist did a ton of lab test that indicated that I had Sjogren's. My point in all of this is that I really wish I had spoken up sooner. More awareness needs to happen about Sjogren's. Those suffering shouldn't have to defend themselves to anyone. It's real, it's relevant, and it can be debilitating. I wish you well. If after educating your family and friends about the illness hopefully they will understand. You will benefit from surrounding yourself with supportive people.
Hugs,
I'm sorry! It is very hard to educate ignorance.
Surround yourself with supportive people and I'm glad you found this wonderful place!
Good luck with the plaquenil, it takes time to kick in but does help.
Sleep is very important so if you aren't sleeping you will feel worse. Try meditating or saying positive affirmations to help.
We totally understand!
Go to butyoudontlooksick for the Spoon Theory. If your brother Nurse Jerk can "get it" it will make him a better nurse. And apply for disability. Now.
Hugs, Sharon
So very sorry you do not feel supported...I felt the same way too at first because we often do not "look sick" some folks think we cannot really be sick. As the previous member suggested, read the spoon theory.
Find supportive people to surround yourself with, meditate, take walks, concentrate on you and feeling better.
This is a great forum filled with supportive folks who will understand and know what you are going through.
Educate folks around you - i have found that if you do this then some will understand and empathize with you and support you more.
I have been taking plaquenil since the end of January and am just starting to feel some of the benefits from it which is sooner than some other folks I know so hang in there if you can.
Best of luck to you.
Lady Di, This is the attitude so many of us here have had to endure, You and only you know how you feel, try to ignore the ignorant ones around you, but ask them to get on to this site.
Your nursing relative needs to brush up , and I hope he never gets a patient with SS to look after !! Know that we understand and care about you. You will learn how to give these ignorant's the cold shoulder , Take care Dolly x
Ignorance is truly the word to use. Also, people are not very nice and say things that are totally rude. I can only say that I have learned to ignore what others say or think cause it is not my problem. I know what I have and what I can and can't do. The interesting tilt to this story is that most people will have some type of health event before they leave this earth. There are very few people who stay healthy and drop dead suddenly.
In the end everyone has to endure some type of suffering. It is only then that they understand what those of us are going through. We have just started a few years early than a lot of people. Also, there are the people who have started their journey with chronic illness long before us in their very early years who are suffering a whole lot more than we do. This is just the way it is and I find it easier to just accept this and go on the best I can.
We all learn to deal with our illness over the years. We also all travel at different rates on the road to acceptance. I can only add that once we accept the way things are we don't waste as much energy thinking about things that are outside of our control. I have been having health issues for about 50 years now and I guess I would not know how to act if I didn't feel sick. It is amazing how much we can learn to adapt to chronic illness and how we can bounce back from the bad flares. It is ok to feel sad and it is great to have a good cry and then get on with life. Those days that one spends in the recliner starring at the ceiling during a flare can be endless but when a good day or two or more come along they make us appreciate the good times.
People with chronic illness are special people. They become tough and resilient and learn to role with the punches. They become less self centered than the rest of the world because our problems are so far and above the mundane daily issues. When I sit and listen to what people worry about, makeup, clothes, vacations, etc I am amazed at how shallow this sounds. For those of us who can only get the energy to throw together one meal a day and then collapse those little things in life become less significant. We know what suffering is and we can relate to others and their suffering. We have the opportunity to be a blessing to those who cross our paths and give the compassion and understanding that the "healthy-self absorbed" people are not able to give. Remember that we are seldom given more than we can handle. Patience is really a virtue that enables us to endure and grow as a person. Good luck and remember--a good cry is worth it. It cleanses out soul and makes us able to make it through another day. Irish
LadyDi
If he was a construction worker or a shop keeper or something, that could possibly be somehow understood. But a registerd nurse has NO excuses. I sure hope he doesn't treat his patients that way - and I would tell him that, too. I agree others before me: He has some serious studying to do, ASAP. Him being a family member gives you a brilliant change to spread awareness of this nasty illness amongst the health care people. Don't miss it, okay?
And yeah, I have faced that, too. I've been on medical leave since November and have at least two more months to go. Just the other day I scolded my daughter (13 years old) because she didn't want to fold the laundry and said that "mom's here every day all day when I'm at school!". So I explained to her how I can't do it because my arms and shoulders hurt too much and that I'm not on a vacation mut a medical leave and there's a reason for that: I'm SICK. She seemed a bit embarrassed and I'm happy about that ;D Today she emptied the dishwasher without a word of complaint :)
The people around us can not know what we are going through if we don't try to tell them as best we can. If twisting an iron wire for them isn't enough, then get an iron rail! Bend it so thoroughly and in detail that they have no option but understand (some of it - they can't really grasp this unless they experience it first hand). If they don't believe you, that's another story.
In any case, hang in there. You're not alone in this.
PS. For me it took six months before Oxiklorin (Plaquenil) did anything much.
Thank you everybody who replied to my post, it is so reassuring and comforting to know that there are so many of you on this forum that understand.
My relative said the hurtful comment to me yesterday and believe me did I cry my eyes out, only to pay the price today with eyes as dry as the Sahara Desert. I often wonder how someone such as a nurse could say something so cold.
I totally identify with what somebody mentioned on one of their responses. We don't look sick, so people have a hard time believing that we are. I try to go about the day as best I can and do as much as possible (grocery store, walk my dog, cook dinner, do some laundry, clean something). I also try to keep myself presentable by putting on some makeup and I wear decent, fashionable clothing. What is exhausting to me seems so very pathetic to the average person.
I don't think that I could qualify for any disability, as I worked before going back to college in a public school system and I didn't pay into social security but rather a private town retirement fund. I am now a licensed and registered professional in the healthcare field (radiology), but this hurricane Sjogren's hit me so hard that I haven't yet worked in the field (but I am hopeful).
Thank you all! I am feeling alot better after reading your replies.
God Bless Lucy, may she rest in peace.
People don't get it until they get it and people don't get it until it's them! I've had a friend tell me when I was going on leave from work "no, you're not sick like that" (she's hispanic, think she meant I'm not that sick). I had my own mother tell me she wish she never had me (so I wouldn't have to go through this). I've had my boss actually mock my forgetfullness (pretended to play the violin for me). But what really angered me was a good (ex)friend/coworker who told me to stop taking my medication because it was costing everybody in the company more (insurance premiums I guess). I also a week ago tried to tell her when I went to my endo appt, everything went black and I nearly passed out and my b.p. was very low, but the doctor didn't even pay attention to me and she played "the worlds smallest violin" on her fingers for me! Would she have done that if I had cancer? And it pissed me off because she knew the boss had previously mocked me that way. I kicked her off my medical facebook page and now she is sending requests to get back on. Hardly.
I am at a point where I am too sick, too tired to worry any longer about what any of these idiots thinks about me and I could kick myself for ever worrying about it. Do what you need to do and don't allow that negativity in your life.
Wow, what great responses to this post. All of you are so wise. You are all right, people won't get it until they get it. I've always thought of myself as a very kind and compassionate person, but having my own medical issues for many years, I had little compassion for people who whined and complained about every little thing. I figured if i could be at work, be a single mom, attend college in the evenings, and often work 2 jobs to support my family without complaining, that these whiners should just suck it up and quit complaining.
But you see, I was the ignorant one. I believe God gives us challenges us to teach us a life lesson. There were 2 ladies that i supervised over the years, that always complained about their health and i felt they were exaggerating their symptoms and were just lazy. I know that I didn't cut them any slack, and I'm not sure but I bet I rolled my eyes back in my head whenever they left my office. Only now do I see how righteous and ignorant I was. Sometimes I'm a slow learner, so not long ago, God stepped it up a bit and has given me enough pain, exhaustion, and challenges to turn my world around. I can no longer work, and i am dealing with the ignorance of people who think this is just a lot of made up stuff or that we are hypochondriacs. I'm sure there have been times that eyes rolled back in other peoples's heads as I've left the room. Thank you God, I think I'm starting to get it. There hasn't been a day pass that I don't think of these 2 women, and how much I could have made their lives easier, if only I had understood. I feel like I need to find them so I could tell them I'm starting to understand and apologize for my ignorance and ask for their forgiveness. I'm living proof that people get it when they get it! So i forgive those that don't understand.
Today my partner of 6 years said he couldn't understand why I have spent so much time on line and on this board trying to learn so much about a disease I may not have. He said it was crazy, it was like I was trying to figure out something the doctor should be trying to figure out. He says I should just let the doctors take the lead because they went to Med school, and I didn't. I explained that I understood his concern, but regardless of what my dx turns out to be, I have gained such a great deal of knowledge about dealing with doctors, chronic illness, standing up for yourself, and about courage from every one of you on this board. I really appreciate each of of you and I would like to thank all of you for teaching me these things. What I know is that each of you get it, and all of us understand why we come to this site...no explanation is ever needed. What I also know is that my partner may never get it, but I'm OK with that.
Quote from: mizzy on April 28, 2013, 07:49:18 PM
Wow, what great responses to this post. All of you are so wise. You are all right, people won't get it until they get it. I've always thought of myself as a very kind and compassionate person, but having my own medical issues for many years, I had little compassion for people who whined and complained about every little thing. I figured if i could be at work, be a single mom, attend college in the evenings, and often work 2 jobs to support my family without complaining, that these whiners should just suck it up and quit complaining.
But you see, I was the ignorant one. I believe God gives us challenges us to teach us a life lesson. There were 2 ladies that i supervised over the years, that always complained about their health and i felt they were exaggerating their symptoms and were just lazy. I know that I didn't cut them any slack, and I'm not sure but I bet I rolled my eyes back in my head whenever they left my office. Only now do I see how righteous and ignorant I was. Sometimes I'm a slow learner, so not long ago, God stepped it up a bit and has given me enough pain, exhaustion, and challenges to turn my world around. I can no longer work, and i am dealing with the ignorance of people who think this is just a lot of made up stuff or that we are hypochondriacs. I'm sure there have been times that eyes rolled back in other peoples's heads as I've left the room. Thank you God, I think I'm starting to get it. There hasn't been a day pass that I don't think of these 2 women, and how much I could have made their lives easier, if only I had understood. I feel like I need to find them so I could tell them I'm starting to understand and apologize for my ignorance and ask for their forgiveness. I'm living proof that people get it when they get it! So i forgive those that don't understand.
Today my partner of 6 years said he couldn't understand why I have spent so much time on line and on this board trying to learn so much about a disease I may not have. He said it was crazy, it was like I was trying to figure out something the doctor should be trying to figure out. He says I should just let the doctors take the lead because they went to Med school, and I didn't. I explained that I understood his concern, but regardless of what my dx turns out to be, I have gained such a great deal of knowledge about dealing with doctors, chronic illness, standing up for yourself, and about courage from every one of you on this board. I really appreciate each of of you and I would like to thank all of you for teaching me these things. What I know is that each of you get it, and all of us understand why we come to this site...no explanation is ever needed. What I also know is that my partner may never get it, but I'm OK with that.
I love this board. I have RA, may or may not have sjogrens. I come here because the RA boards have either very few members or people just don't respond to your questions. And either way, there really are so many similarity between the autoimmune diseases. I have learned more here than anywhere else.
I too forgive ignorance. What I don't forgive are people who know better and go out of their way to hurt me. People who were friends and say purposefully hurtful things. I would never talk that way to anyone, let alone a friend.
My advice is that you shouldnt apologise for being ill and you do not have to justifying yourself to anyone either with excuses of why you cannot do what you used to do. It's their problem, this ignorance and lack of empathy. If you can, sleep when needed, and ignore the chores when in pain. Focus on yourself and getting yourself right. Anybody says to you again that you look ok you tell them that actually you arent, and add that you dont feel the need to explain yourself.
An Open Letter To Those Without Invisible Disability Or Chronic Illness ...
http://notdoneliving.net/blog/openletter-id
Thanks for posting this Lighthouse 33. I saw where there were other adaptations to the letter.. I may write a variation for Sjogren's.
Sjodry
Quote from: litliwlowa on April 29, 2013, 06:43:51 PM
I tried sharing that link with my SO, so MAYBE he would GET it. He reads it, and says " I don't get it." Then he goes in the other room, plugs in his radio and tunes out.
I had hoped it would help him to understand. Sailed right over his head.
There are days, and this is one of them, that the world is simply too big. My best friend who lives out of state - her internet has been down for days which also knocks out her phone line. So I can't call her and cry on her shoulder.
So here I sit, crying, 'cause it hurts, you know? It's hard enough he lost his job, didn't work enough hours to even get unemployment on the job he had, so the only source of income is MY disability check, and I CANNOT "carry" his load. I simply cannot.
So once again, he tunes out and I get to figure out how in the ahem I am going to get thru the next three weeks, on top of getting scoped top and bottom "floors" day after tomorrow, and something as simple as him even having the cab company's phone number, making a call to be sure they can pick us up after is apparently too much effort, I won't be able to drive for 24 hrs and my SO has no DL.
It must be nice for him in to live in lala land. I'm about sick of it. Sick of being sick and about sick of him residing in lala land oblivion.
I'd be quite lost without all of you. Right now it's the only emotional support I have.
Saw my vascular doc today, he adjusted my BP meds and wouldn't you know? For the first time in my visit summary, Sjogren's was listed under "current medical issues this visit" (along with a gazillion others).
Lighthouse 33? I so appreciate you sharing that link. Since 1985, I have struggled to find the right words on that very topic and every element mentioned. There was a time I wanted to scream if I was told one more time "but you're so smart. How can this possibly be hard for you?" as one of many examples.
Litli Wlowa
I'm so sorry!