I believe I learned a lot about people and how illness of someone they know or love especially affects them when my husband was diagnosed with early onset of Alzheimer's he was only 52. Two years after diagnosis he had to be placed in a care facility due to his being physically violent. Two years fter that he passed away from complications of the disease.
Friends, family, neighbors all sort of disappeared. At first I was really angry, then very hurt, but as I learned more I realized they just didn't know what to do. Some of them were scared, many of them felt guilty that their life was "normal" whatever that might be. That being the case when my RA worsened I was not all that surprised by the reaction from some of them.To be realistic, IMO, any serious disease is scary and makes you worry about your own health and those around you.
Anyway, I know you'll get through this, and I truly believe once you family accepts the fact that you have a genuine, dibilitating illness they will become more empathetic and helpful. They just need time to get used to the way their lives are going to have to change just as yours will.
I don't think there are any rules about not posting email contact so here's mine in case you need to throw a hissy fit I sure do now and then.
I sympathize totally with you. I experienced the same attitudes from some of my family and most of my coworkers. I learned that trying to convince them about my condition was pointless.
I don't believe they were deliberately being unkind. It is difficult to understand such diseases when there are (at first) no clear symptoms. When my fingers began "warping" best definition I can come up with people started to realize the truth. Then I had a different reaction from some, disgust, concern about the possibility of contagion and so forth. Now I can laugh about the drama (sort of) but at the time it presented itself there was nothing at all to be amused about.
I had worked for the company for over 20 years in a front desk position, but once my symptoms became evident I was transferred to a lesser public area. It hurt, but it also made me realize what it must be like for people who live with disfigurement of all kinds. Something I never seriously thought about before. In a strange way, I truly believe RA has made me a better person spiritually and humanely. "Stuff" is no longer important to me and neither are the negative attitudes of some people. I am grateful everytime I overcome some small challenge like making it up the stairs without having to stop and rest.
I do get depressed sometimes and feel sorry for myself but for the most part I try to accept my diagnosis as a learning tool. How long I can do that is anyone's guess, but I am for now coping. And you obviously will also, because it is very apparent that you are an exceptionally capable person.
I believe eventually you will realize that what matters is that you take time for yourself no matter how much someone else complains. Try not to feel guilty about not being able to do it all. None of us can accomplish that, all we can do is our best and if that isn't good enough for those around us..too bad!
I also found out that many of the people who thought I was just a "crybaby" were actually afraid. Afraid that my changing of life ws going to affect theirs in negative way. Afraid that they wouldn't know how to interact with me. Afraid that it might happen to them, and other such fears. That, I believe is what is/was behind most of the criticism.
Take care, get lots of rest even if it means someone gets upset and remember you are not alone.
I really appreciate all the responses and suggestions. I feel a bit better knowing that there are people who can actually relate to what is going on with my body, my life really.
I would like to change doctors but unfortunately my supplemental medical insurance provider combined with Medicare coverage doesn;\'t leave much room for changes.
I know part of my problem is I am so darned stubborn and have trouble admitting that I do need help in some matters and also I need to accept the idea of medication(s).
I am also in the position of not being able to keep my home maintained the way it should be and not being able to always afford to pay someone to do things that need to be done.
Sorry, there I go again, whining. Venting actually, because I do remind myself that things could be worse and maybe they will be in the future. But, I am going to try not to worry about that. Thanks again to all of you who took the time to "listen" and respond.
When I first was diagnosed I thought, Oh well, that's what happens when you get old(er).
Now that I have lived (if you can call it that) with the pain and aggravaton for six years or so I just can't see any reason to keep on keeping on.
I realize I am really, really tired and depressed which makes everything seem worse. But, I am tired of hurting, of having to make adjustments for every little thing, like not being able to garden or take walks without being exhausted.
My doctor tells me to learn to deal with it but he doesn't say how to do that. I don't want to be medicated to the max. I don't want people (and a lot do )telling me to "just do it", as if it were that simple. I want to be "normal" again. What's the point in continuing to live if I am going to get worse as my the last prognosis indicated?
I know thousands of other people suffer much worse afflictions than I. That's why I am truly sorry to sound so self pitying. But being unable to use my hands, walk, do normal things without pain or even talk in a normal voice seems like too much to bear sometimes.View Thread