I am a little frustrated. I am wondering if family or friends ever really get it? Will there ever be understanding? I feel bad enough as it is that i have more and more limitations but to add the disappointment of others on top, is gutting. The old demands of mom and wife and working daily take there toll. There are times i just cant! But when i cant they get frustrated with me and its so discouraging. What will happen in the future when/if things get worse? There have been so many times i have cried and pushed through it because it needs to get done but i know i cant do that much longer. Has anyone else had any similar experiences?
I am there with you. I think my husband is really starting to get it but even understanding it doesn't change all of the tasks around the house and in daily life that need to get done and those things put stress on him and guilt on me and can cause friction between us. Communication is so important. I have to let him know I am not feeling ok and it gives him more of an idea of what he can expect from me for that day.
I have seen other people post about changing our expectations of what 'normal' is. Making changes in our lives to accommodate our limitations and to be kind to ourselves.
I believe that my family still does not get it. Even though my mom has an autoimmune disease, sjorgen's syndrome, she is able to go on with life. She has made little adjustments. It is hard for me to see this and know that at her age I will not be able to do the things she is doing. So when she sees me, she tells me to just push through it and when I do it I sure pay the price!
But overall my family is great.. they have purchased a scooter for me to get around, they have found some household help to come in twice a week to help with the household stuff to give me a break. It is just normal for them to want the old mom/daughter/wife back.
My wife is an RN and still doesn't seem to understand what is happening with me, and what may change in our future. I had my first Remicade infusion yesterday. I was a bit apprehensive but she kind of just shrugged it off. It's almost as if she's in some type of denial.
Yes Guardian, I know what this is like. It began for me when I had breast cancer in 2005. And I experienced it again when I was in a horrible flare in 08 and was finally dx'd with fibro. And now that I have recently been dx'd with PsA it is rearing it's ugly head again. Family and friends "mean well" but have not got a clue. And if you try to educate them they get indignant! Really? I don't understand what THEY find offensive when we want them to learn more about our illness. They should WANT to know as much as they can about what has disrupted our lives completely. Instead they turn it into being "about them". Sure it affects them because we can no longer do our part in their lives. But do they honestly ever think of what it feels like from this side?? Doubtful.
I printed out educational material back when I was dx'd with fibro and gave it to them. When I asked a couple weeks later what they thought of it. it was clear by the looks on their faces they hadn't read it and didn't plan to.
Remember this one quote (I can't remember who said it) "We can only control ourselves, we cannot control others". In this instance we cannot control our health or how others perceive us.
Here's my take on it. Some people will get it soon. Some people will get it eventually. Some people will never get it. We cannot change others, but we can change our perception of the situation. And we can give others tools to use when dealing with us.
For friends: http://rannygahoots.blogspot.com/2012/05/whats-point.html
For everyone: http://rannygahoots.blogspot.com/2012/10/not-just-arthritis.html
For anyone who has ever dealt with a todder: http://rannygahoots.blogspot.com/2011/07/psa-on-psa.html
With my kids (I have five, ages 4-13), I explained to them that I have Psoriatic Arthritis, which makes me tired all the time, hurt a lot of the time, and makes it difficult for me to do things I used to do. It means they need to help more with household stuff, be patient with me, and help me find new ways to spend fun time with them when I don't have the energy or hurt too much to do the more active things we used to do. We now do a lot more reading together, watching movies together, playing card games and board games, doing puzzles, etc ... and talking. It's wonderful, actually! :) I had the same conversation with my husband, about a hundred times, he'll get it one of these days. LOL
I, the mean person I am, waited until my husband was sick. Joint pain, coughing so much his chest hurt (I have PsA in my chest!), exhausted, etc. and as he's laying in bed, I handed him a list of things to do while I took the kids grocery shopping with me (at his request, as he was sick). He looked at me as if I'd lost my mind. I said to him - "I don't actually expect you to do the things on the list because you're sick. I do expect you to remember how you felt, thinking I expected you to do all those things feeling the way you do, because that's what it's like to live with PsA and with the expectations of others." I think that's when he really started to get it.
There are people in my life who just don't get it and probably never will. I don't worry about those who never will. They can take care of themselves. If they get upset with me, it's their problem. I'm doing the best I can do each and every day, even if the best is staying in bed all day.
I've had PsA since before I met my husband, and before I had kids. What they have trouble with is the up and down of the disease. I've had years of doing better, and years of being almost bedridden. In between all that there are good days and bad. Mostly they take it as just how it is, what they've always known. I know my husband gets frustrated, depressed, and anxious when I have a prolonged (2 weeks) period of complete debilitation, because he's trying to work AND take care of me. My kids are older now (almost 12 and 15), so they help A LOT and can do things on their own. I know they will grow up to be compassionate people because of my disease, and that is a gift.
This is every single day for me, too. They are starting to "get it" a little, but it seems that as soon as they do, some other wonderful symptom pops up. I don't imagine anyone can really understand what we go through unless they have PsA themselves.That's why this group is so great. I know my family is very frustrated with me due to my limitations, but they are also frustrated that they can't take this stupid disease away and have the "Mom", Wife", "Daughter" and "Sister" that they used to have. Speaking for myself, I think I am more sensitive to their comments, as I am my own worst critic. I'm having a hard time getting past the guilt and self pity. But just the other day, when I came home from work (part time now) my 23 year old daughter was at the table and I told her "I'm sorry, but I just need to lay down for a little while" and she looked at me and told me that I had nothing to apologize for if I needed to lay down. Maybe they are "getting it" after all. Please stay strong, come to this group when things seem too much and know that we all get it and understand.
Wow! Thank you all so much! It is such a relief to know there are others going through this too! I think my biggest problem with it is realizing that I have new limitations it seems all the time. It’s difficult for me to accept and admit it to myself. Sometimes I think my family and friends are partly in denial and partly they just don’t understand. I hate whining so I try hard not to complain to them. It does hurt me though when they see I’m having a rough day and they don’t help or ask to help even a little! I sure hope my meds (which I start next week) kick in and help me to be more productive! Thanks again to all of you!!!
My biggest fear right now is starting the meds... Should I be worried at all?? Enbrel? is it dangerous? The dr.. doesnt want me to stay on mtx.. he thinks it is harmful in itself... Any comments or suggestions? Why doesnt pain medication touch the pain? That is what I dont understand.... if it wont touch the pain.. why take it?? Im frustrated...
Karen,
Like all meds, the ones for our disease can have side effects. I've been on Enbrel and other TNF blockers for 11 yrs now. And I'm not dead :) Most of the side effects are easy to spot and control with changing meds. Or they work well enough despite side effects that they are worth staying on. My position is: the disease is worse, it never goes away. Keeping it at bay enough to function is the goal. That means meds, that sometimes sound scary. You won't know how your body responds to it until you try.
A dear friend on here sent me this link a while back and so far this has been the best way i have found to actually explain my condition without people glazing over ....
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Has anyone else had any similar experiences?
Only every day. Most days, I am able to keep a decent attitude about it, and am patient with those who don't understand. After all, it's MY problem and it took me years to understand and accept it. I'm sure it's a tough haul for my family, too. But, other times, I'm not so able to accept that my family doesn't get it. I grow weary of continuing to explain something that they simply do not take the time to understand. And, it grates on me that they cannot be bothered to understand something that affects every move I make, every day of my life. To be honest, life is easier when I am patient with my family. Resentment is hard to carry around.
PsA has taken some ugly turns for me over the past few months, and, like everyone else who posts to this board, I am frightened and somewhat baffled, in addition to being sick. The stress of dealing with family members who continue to push when we are struggling just to keep going not only doesn't help; it is flat out harmful.
I'm glad you brought opened this topic, Guardian, because, like you and many others, I am really struggling with this these days.
It was quite stressful at first to understand why I was feeling like I do while trying to explain others the why I was searching for. I took to the internet looking for answers, and I did like nym did. I printed articles, emailed them, and discussed them with my family. Still, the questions continued. My sister even told me a few times to stop faking it. Another sister was diagnosed with RA and she became my advovate.
Now, they see my deformed hands and my skin and they have becomed my best allies. I guess my body convinced them when my words could not!
I’m so sorry, but you are not alone in this. Even friends & family with the best intentions don’t really get it. I’ve been slowly teaching myself to just stop when I need to, or to factor in more hours or days into what I schedule. At the end of the day-any day - we can only do what we can do.
Wow, firstly I would like to thank you all for contributing, it’s amazing that we all get it! I would like to thank those friends who put up links because those were like a breath of fresh air! I think I have to remind myself to take of me so there is something left to take care of everyone else but that is a challenge for me! I need to figure out my new balance of my new life and hopefully, eventually they will follow!
Yes everyday I feel like that especially the last few years
It is so true that some people will never ‘see it’. I have varying degrees of success educating people…especially the healthcare professionals I work with! My sons are great and if I don’t get round to things or can’t attend things they are compassionate enough to understand. I’ve noticed some people are blind and don’t want to see…they really can’t deal with the fact that I am not physically the person I was…and I now let that be THEIR problem not mine. I have lost friends because I can’t give like I used to but the true friends are still here, treating me they way they always have 
My partner excepts me as I am on any given day and knows that my body is unpredictable, but I’m blessed with a good sense of humour, a happy disposition, and tolerance of most things, even pain so I’m very lucky…I do believe that if I cried, constantly moaned about the pain and refused to laugh some people would then ‘get it’ but that would be letting PsA change me on the inside and that’s a step too far
Thank you all for reminding me how blessed I am to have a husband and children who love me, care for me, and protect me. I am so sorry for the lack of support you are experiencing! Praying for you...all of you, that you will find the strength to carry on and that God Himself will comfort you. When nobody else understands, He does...Hugs to you all!
Before we ask "will they ever understand" we have to ask DO I UNDERSTAND.
I'm surprised how often we don't. Have you ever sat in a mall just watching people and wondered as different ones go by "what is going on in their life" If you do and don't get teary, something is wrong. parents with special needs kids always get me (we are in that class BTW we have had them in foster care for years - but its never bothered me, well I did get into a fist fight with a dad once, avoided several others, who got rather nasty when I suggested their kids pointing and laughing or name calling on the bus was inappropriate)
What gets to me are "unattractive people" especially the extremely obese. When I see the obvious attempt to make themselves as "attractive as they can. well matched clothes etc etc. I just imagine then dressing in the morning with their bright colored sweats thinking to themselves, maybe today someone will notice "me" for me. How can you not get teary?????
Everybody has "a cross to bear" (or they are taking better drugs than I get) They more understanding we are towards othesr honest to gosh, the more understanding they are to us. "Gosh honey I wish I could help you with that. it isn't fair for you to have to do it by yourself" has scored me brownies AND a foot rub.....