Perhaps the most frustrating thing about being disabled is needing to ask for help.
The second most frustrating thing is navigating the whole dynamic of being the person who is being helped. Low and behold, I have discovered that many strange things can happen when you ask your family, friends and strangers for help. All of a sudden, roles emerge, power and position come into play, feelings arise and demands are placed on the parties involved. It's the kind of stuff that has to potential to cause as many problems as it solves!
Needless to say, I feel strongly about how I want this helper/helpee relationship to function Don't offer to help and not follow through
You have no idea how much I need help from others and how little money I have to hire someone to help me. So when you offer to help me out of the goodness of your heart and free of charge, I absolutely want to take advantage of your offer. So please don't get my hopes up by offering to help and then not follow through.
Don't point out my failings
Yes, I can see the less-than-perfect state of my home. This might lead you to think I have the housekeeping disease du jour, but let me assure you I do not. I have chronic pain and chronic fatigue and you have no idea how much this truly limits me each day. So please don't fault me for using my two to four hours a day of activity time on things I enjoy doing instead of housework.
Don't ignore my directions
Yes, you are doing me a favor. Yes, I am grateful for the help. But just because I need help, doesn't mean I can't ask you to follow my directions and supervised you in the process. Don't do the things I can do myself
Another problem I have run into in asking someone to help me is that invariably they start doing the things I can do myself and avoiding the things I really need them to do for me. It might seem unfair that I do the easy stuff and you do the heavy lifting, but that is my reality--I have physical limitations. Translation: I am not a slacker!
Don't think I should be happy with whatever help you decide to give me
Just because I have to ask for help doesn't mean I have to lower my standards. I still have my preferences and my way of doing things, even if I have to rely on others now to get the actual work done. Yes, I realize that I may have to compromise, but compromise doesn't mean you call all the shots and I have to put up with whatever help you decide to give me.
Don't treat me like an invalid
Just because I need your help doesn't mean I want to be treated like a child or an incompetent person. I want to participate as much as possible, even if that means just sitting in the same room with you and watching what you are doing. In addition, I retain my rights to make my own choices and express my preferences; so please don't speak for me or make choices for me.
And by the way, unless I specifically ask you, please don't hold my arm, direct my movements or pet my head. (Don't ask ... and yes, these things have happened to me.)
Don't give me attitude
I really get it that asking for help creates a weird dynamic between us. If I tell you what to do, you might think I am being bossy. If I supervise you, you might think I don't trust you. If I get grumpy in the process, you might not recognize that I am getting tired or sore and need to take a break. If I take a break and lay down, you might think I am being lazy. If I ask you to do the heavy lifting, you might think I am trying to weasel out of the hard stuff.
Please, I beg of you, don't go there. I am not trying to be difficult, demanding or dictatorial. I just really want to get some things done with your help.
In closing, let me say that I truly wish I did not need to ask for so much help with my day-to-day life. Deep down, I truly feel frustrated that I can't do everything for myself. Just know that this is my reality, created by my multiple chronic illnesses, and it only hurts me to pretend and deny that I need your help.
On the other hand, please don't make me feel less than when I find the courage to ask for and accept your help.
Click Add Your Comment and let me know your response to what I have to say about asking for help.