So, I've been dealing with people ignoring and taking light of what is happening to me. And needless to say I have been feeling very unimportant and alone. So, now I guess, I'm thinking about sitting my family down and printing out some info on MS, and explanations of some of the sx, and letting them know exactly what I am going through. No one in my family, except my mom, has asked me about IT, or asked me how IT makes me feel, or has even showed any interest in what I might be fearing or going through. I guess that makes me a little hurt and angry. One thing is holding me back on doing this though. . .no diagnosis. I have left my symptom journal out, hoping someone would pick it up and read it, not even my husband will read it. Don't get me wrong, he is a wonderful man, but I think he's just afraid to see there is something wrong with me. I have let all of my loved ones know that I am being tested for this, but no one has any questions or even seems to have any encouragement either. It's just a subject that has not been touched since December. So, I go on and push myself when I feel like going to bed and covoring my head, I entertain, fix dinner, clean the house, do the laundrey. . I pretend there is nothing wrong myself.
To inform. . .or not to inform. . .that is the question.
Without a diagnosis, this is a very hard question to answer.
To inform. . .or not to inform. . .that is the question.
Without a diagnosis, this is a very hard question to answer.
Replies
i say inform. it is really very hard to pretend nothing is wrong and you shouldn\'t have to. last night my right side went weak and uncoordinated on me shortly before my husband went to work and i limped over to him and kissed him goodnight because he\'s working nights right now. i put a happy face on it when he asked if i was okay. i really didn\'t feel okay. so i really feel for you. i say inform, but don\'t push it too much. your family just may not be ready to face the fact that you are actually sick, especially your husband. i\'m going through something very similiar right now. if you want to chat feel free to message me.
I too would encourage you to inform. But please also try to keep this in mind. As scary as this all may be for you it is just as scary for your family. The unknown is sometimes worse than the known. They are not sure what to expect, they don\'t know what will change, and most importantly they don\'t know how it will change your relationship with them. While nothing emotionally changes within a relationship the physical differences are unknown and scary. I have found that my children have been affected because they don\'t want to hurt me but at the same time they want the same ole mom they have known to be available. It is a learning time for everyone. I have found that people don\'t ask not because they don\'t want to know or don\'t care but sometimes they don\'t know what to say. I hope these words encourage you, also remember that most of the time people don\'t take time to reflect on others feelings because in todays world it\'s all about me as an individual not about helping and caring for those around us even if we are family.
This journal is like a page out of my life! I have felt EVERYTHING you wrote. My Mom use to give me the Avonex shots. She would cry every week. I finally told her I didnt want her to do it anymore. She didnt know that after that I was completly not even taking the medication anymore..(I felt if I pretended that it didnt exist it would just go away!?!) It was months before she asked me about Avonex. It was almost as if she was pretending that it didnt exist too! I did the whole \"try to inform\" piece. Just when you do educate your family, realize that its taking going to take time for them to process the information and you might not get the reaction ur looking for.
I know how it is..I have had people in my life treat me the same.Have doubts about me truely being sick or just faking it.I once had a doctor ask me if I was faking my systoms.Can you believe that?I was so upset.it took almost a year to DXD,I saw 10 different docs before one had the nerve to say I had MS.My brother refuses to even aknowledge me.As if I just don\'t exist to him or his family anymore.I have tried to contact him with no success.My dad wants to help but he just seem to get the whole picture.
Ditto on what NanaMiller said! It\'s sooo hard for family members to talk about such a chronic & devastating illness, without a CURE! Even after 19 yrs., I still run into that, even with my husband. He\'s a great guy, & very supportive-just breaks his heart he can\'t \"fix me\". Do you have a appt yet? My best to you, Peg.
Wow, thankyou all so much for the support and encouragement! Can I marry you??!!! I will be sure to remember everything you have all suggested and told me. I will be praying for all of you, you are a great family! I love you! ! !
Sherie,
I agree with what everyone else has said but I think there is a real compication in your situation in that you don\'t have a diagnosis. Is that because no doctor will say (like in my case doc said pretty sure (even after spinal tap and after 3 MRI\'s) but doctor said pretty sure. Has a doctor given you the diagnosis?
My neurologist even offered to talk to my wife (at the time). Have your doctors discussed it with you. I know for me it was pretty difficult to believe (or to accept) but at least I had two doctors who agreed with the diagnosis.
This disease so often leads to the patient being accused of exaggerating or the like it is a good thing to have a doctor on your side when dealing with family.
I know when I was diagnosed my parents read and learned more about MS than I did while my wife at the time sort of ignored the whole subject.
I hope your family shows you the understanding you deserve.
I am on medi-cal, so it is really hard to get in to see a neuro. I am still waiting for approval from my insurance. My regular doctor has given me a brain scan, MRI, numerous blood tests, all showing nothing. I am being tested right now for b12 defiency. . .waiting on results. But my reg. doc has said he strongly suspects MS. So, now all I have to do is (hurry up and wait) get in to see a neuro for further tests. I have still been having symptoms, they\'re not as strong but they are still there. Over the last 3 months new one have been added, and older ones have subsided. It\'s pretty textbook. So I\'ll just have to wait and see what happens in the next couple of months. Thankyou Larry for your support.
Dear Sherie,
When I read this entry it was like reading my own life with just a few subtle changes. My husband does not really understand MS and the symptoms because he is in denial. Oh he is a wonderful person and great husband but I know him and his total avoidance or short answers without any discussion are my clue. It\'s kinda like \" whatever honey\"
But I realize that this has been a shock for him and I have to keep reminding myself of that. We women have and always will have to the \"strong\" ones even when we don\'t feel like it and I think we have to be realistic and realize that some days we are gonna feel good and some days we are gonna feel bad and some days we are gonna scream and feel like pulling the covers up over our head. I went to church on sunday for the first time since I have been home from the hospital and I am so glad I did because it gave me strength to get through the day. Hang in there girl it may take awhile but things will get better.