Tell Us: What Was Diagnosis Day Like for You?

Denise

Tell Us: What Was Diagnosis Day Like for You?

Denise
During our caregiving experience, we have days that become something like life markers for us. For instance, we remember the day that our career received a diagnosis for the first time. Diagnosis day becomes pivotal as it becomes the defining mark separating life before caregiving and our life after caregiving begins.

A diagnosis day can hold many emotions. It also can provide insights into how the health care system works with and sometimes against us. It also can change the dynamics in our family and in our relationships.

For you, what was diagnosis day like? Who supported you? How did you support your caree? What did you do after you received the news? How did you share the news about the diagnosis? In our comments section, below, please share your experiences on Diagnosis Day.

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Diagnosis day for us was April 1, 1998, (I am still waiting to hear \"April Fools\"!) it hasn't happened. We were sitting in the Neurologist office waiting to hear the results of my husbands MRI's, he had spent the last two days having imaging done after going out to play basketball at the park with our boys and their friends when suddenly his left leg stopped working. He dragged himself home, his leg limp with our 11 year old boys stunned. We played volleyball with a church group and were soccer coaches for the boys indoor team, we knew something was terribly wrong. Those we knew suggested a slipped disc and tried to give comfort & encouragement but we could tell they too knew it was more serious than that. \r\n\r\nI will never forget the look on the Dr.'s face as he opened the door, he didn't need to say a word. We had done our research and knew we were most likely facing a Multiple Sclerosis diagnosis, his face confirmed it. He spoke with us for a few minutes, not giving us much hope saying the best we could hope for was that he wouldn't become wheelchair bound. I asked a few questions, \"Is there anything we can do? Lifestyle changes, diet, nutrition? Would anything like that help in any way?\" He looked at me and said, \"If that would make you feel better go ahead\". I wasn't too pleased with his response, I was looking for more.\r\n\r\nWas this day a marker for us? Absolutely! I remember walking around in a fog, it took me 6 months before I was able to talk about the diagnosis randomly if someone asked me how my husband was doing? I needed to plan to talk about it so I could make sure I was able to get through the conversation without falling apart. We were in our early 30's raising 4 children. How were we going to be able to do this along with an illness that no one really knew much about? Everyone had heard of MS but no one really knew what it was, neither did we. We lived far away from all family so we were alone on this journey as far as family was concerned. The one thing I noticed immediately is there was a \"great divide\" among the people we knew and were friends with, many took a 'giant' step backwards, a few took a step closer. I was surprised by those that stepped back, like they might catch something if they were too close and just as surprised by some that stepped up. You learn a lot about people when life stops looking like everyone else's. We were more alone than not, it was difficult.\r\n\r\nAt the time I had gone back to school and was taking a Technical Writing course, I decided to do my paper on Multiple Sclerosis. So the research began not just for the paper but so we could learn as much as possible about this illness to live the best life possible. My family tried as best they could from a distance to be there and support us. I found that my husbands family wanted me to make them feel better about what WE were living with and going through. Once I recognized that they didn't know what to do so their solution was to do nothing, I eventually let them off the hook and allowed them to support us or not. They chose not to, so unless we let them know how we are doing there wasn't any communication. I realized the hard way that those you think will care have to be allowed to care in their own way, even if that means they put blinders on and choose not to know and stay disconnected, and that it's okay.\r\n\r\nThis time in our lives is Imprinted in my mind, I will never forget the emotions, struggles and people that were there AND were not there. It definitely was a pivotal time in our lives. Thanks for asking the question, we have been on this journey for a long time and there are very few who know what that was like for us. MS is sometimes described as the \"invisible illness\" until the person becomes incapacitated, so we lived for a long time 'invisible' to the world until he lost the ability to walk a few years ago.