Someone please help me to understand why is it that when I need help doing physical things that I always get this blank stare or a look like I have three heads. The worst part is this is from my friends; people who know me. I am at the end of my rope. I am tired of stressing myself out trying to find ways to get things done on my own without setting my body on fire because it is retaliating from all the torture I put it through. I know that they can't assimilate to what I am going through but if they just could realize that I am asking because I really need help, not because I just don't want to do it. I am fighting back tears as I write this because my heart is broken. I thought that once I had a formal diagnosis that they would be more understanding and nothing has changed. :(
I'm sorry you're having such a rough time. When I was in my 20's I had back surgery. I had to ask friends for a lot of help, and I remember getting that response. And crying a lot about it. It was a really tough process, and I remember losing a lot of friends during that time frame.
I'm not sure what the solution is. I know that my situation is totally different now. If I were to have surgery now and need that level of assistance, I would have no problem asking for and getting help from friends, neighbors, etc. I'm also married, and my husband is wonderful on the day to day stuff.
One thing I did find was that if I simply explained that I was asking only because I was absolutely unable to do something, it was more likely to be well received. People may not be more understanding because this is invisible in most cases.
Thank you for your response I really needed to hear that. and even as I get upset i also get upset with myself because I feel like maybe i am being selfish or whining (even though I know I am not). I was talking to a friend of mine at church who has a few auto-immune disorders and she said the same thing about the diseases being invisible and people not getting that you are in pain. I am glad to hear that things are better for you now. thanks for your support.
Toes, I don’t really have anything to add, except that, yes, I know what you are saying. I know I need help doing physical things, and my husband is great about helping. He also chides me for doing things I should ask for help with. I need to hear that sometimes. That’s not where the problem is. Like you say, it’s with others who just don’t “get” the invisible illness/pain thing. There are times that I even feel guilty about asking for help (or using the store scooter, or flashing my parking tag) and I ask myself whether I’m just being a wimp.
What else can I say? I’m sorry that you’re shedding tears about a condition that’s already bad enough without this emotional burden. That’s the beauty of this site: you can vent and we get it!
Thanks for understanding, it really helps. I care really deeply for my friends and that is what makes it so hard. if it were a stranger or someone i hardly knew, I maybe a little offended but not hurt like this. I feel much better getting it out. :)
Ya, I know. And those are the friends who would say something like “If you ever need me, I’m here for ya, Hun!”. That’s why it hurts so much. They don’t do it on purpose, you know …
I got tired of explaining, and once people know I have PsA and I need help I simply hand them something and say "please open this" or "please open the door for me and hold it", things like that. My friends are not phased anymore by me handing them a straw in a restaurant and asking them to open it, or waiting at a heavy door while they open it. Sometimes just DOING makes it sink in for them than talking about it. I know my friends don't think twice about opening a heavy door or a straw, but having to do it for me on a tough day really makes them "get it" at a level they wouldn't otherwise.
I could only think of the door and straw example off the top of my head this morning :)
Thanks for all the responses and support it really helps. and what you said Seenie is the heart of the matter; you hit it right on the head. I am glad that I am not the only one, then I don't get so hard on myself for feeling this way.
You have heard the nice supportive comments and I could not agree more......................
I have two sister with this thing also and feel bad about what I am going to say because the sister I'm talking about is no longer with us. (She took the easy route instead of going to PT with my other sister and i she went to pain management, the side effests of the drugs available at the time were too much for her etc etc)
My surviving sister and I were talking the other nite and came to the inescapable conclusion that Barb was the biggest PIA ever........... (Exactly what Seenie is was afraid of becoming) She constantly was needing help - and she did. She REFUSED to learn how to live with her disease and make adaptations. She would call her kids in from to open a bottled ice tea for her. because she didn't think she should have to have her supply (she musta drank 12 a day) pre opened/lossened. She never missed an opportunity to let us know her condition and need for help....
I'm not suggesting anyone is that way, but we need to be careful that we arrange our lives in such a way we don't need to regularly depend on others.... We also need to be certain we aren't so angry at our disease that we aren't constantly sitting on the pity pot asking for help when we really are asking for is pity........................
You’re right, Lamb. There’s a line, isn’t there, between being stubbornly independent and being that PIA. And yes, I’m afraid of crossing that line … or have I already?
I'm not sure where the line is.... But I think my wife has it clearly drawn in the sand. She just won't tell me where it is. I suspect we all cross it from time to time.
That’s how we find out where the line is. 
Crookedtoes, i don't have any idea how old you are. If you're young, is part of the problem that you are the first person your friends have had to deal with who's their age who needs occasional help? Many of them have no concept of what your life has become. There's no cast on your arm, no crutches by the table to remind them daily that you're still hurting. I'm not sure what the answer is. I have a friend who has had mobility issues her whole life. She'll just hand someone something and say, "Here. Carry this." The directness is refreshing, but I'm not sure I could pull it off the way she does.
It is really hard to know where the line is. I feel like a tightrope walker. At first my family was yelling at me to stop trying to do everything and ask for help when I need it. When I finally did that my youngest (15) got really scared and angry and is afraid I'm gonna die. So now I'm back to trying to do everything my own to show him that everything is gonna be okay. It's exhausting worrying about me and everyone else.
Yea well my friends who act like this are older than I. I am 29 and they are in their late forties to early sixties. They are all in great health so they have a hard time understanding. I live on my own and there a lot of things that I do myself. I have learned to adjust my day to day routine to get things done. but things like painting a room, shampooing my rugs or moving furniture those are the things that I struggle getting help with, that is why it frustrates me. It is not things you do all the time or jobs that take forever. well I will just continue to be patient with my friends and when the time is right these things will get done :)
I have struggled with the line also. I tend to do things myself and my husband and son remind me to ask for help. Since I walk with a cane outside of the house I find people are much more helpful but I still seem to be the three year old saying, "I will do it myself!" I remind my son and husband to show they love me enough to let me struggle. I must be afraid of becoming a PITA as I struggle so on the other side of the line. I thought maybe I was too impatient to wait for help but I have really worked on patience and I do not think that is it.
The other day I got my cart out of the back of the car at the mall in preparation for some shopping with a capital S! My teen age son was aghast. Apparently looking like a bag lady is a bad thing! We reached consensus: I would leave the cart in the car and he would carry my bags, making trips back to the car as needed. Too funny! That line is so hard for all of us!
What a sweet teenage son you have who would be your “bag porter”! Do you lend him out?
The “help line” is a difficult one, isn’t it, as it is changes from day to day and situation to situation.
I'm so sorry. I understand how you feel. No one really understands this disease. Even the doctors, they know the clinical term and some symptoms but they really have no idea. No one I try to speak to understands either. I think when people hear arthritis they make presumptions of the problem.
I've had to get used to asking for help. It's not typically my style to do so. I think my son has finally figured out how much pain I have sometimes. Lately it's my foot. I guess seeing me limp around the house is a reality check for him. Thankfully he took the dog out for me last night.
Hang on. I would help you myself if I could. I can't even open a jar some days.
Thanks for understanding. I am the same way I really do want to ask for help, so when I do the rejection is hard. There is that line. Also realizing that the more I open up and ask for help in the beginning when I need it I am more likely to get a positive response. Rather than waiting until I the last min. or going until i injure myself because I tried to do it alone. then more people will start to realize and see what is going on.
Seenie- David really is a sweet, sweet boy. He will be 19 the end of this month and although his birth was a huge surprise he has been the light of my life. I would love to loan him to you (esp. last week when he crashed my car!) I am afraid he is on his way to Florence next month so we will both miss him! I just noticed yesterday at the movies that he keeps his hand behind me when I am climbing stairs with my cane! I have no idea where he picked that up but I am going to keep a better eye on my backside to see who else might be doing it!