One thing that I have rarely found discussed in my medical appointments is how my condition affects other family members. This can readily be broken down into different segments, and each reader will have their family makeup unique. Whether you are blessed with strong family support, or literally have no family to support you through this journey, it does impact your coping skills. I begin my own comments where my family first began ~ my immediate family from birth. Future pages will reflect more intimate relationships. Again, the question. How has your own situation affected those relationships that are/were closest to you?
I think the first question many people face is:
- Should I share this with my family and close friends? and if so,
- When should I share it with them?
If you are like me, you may have given it some thought in your mind. Set up the scenario of how it would go, when to share, with whom in what order. I am a planner by nature. Others are given to blurting out everything to everyone the moment a situation arises. Then there is the third scenario I have most commonly seen: tell absolutely no one necessary, deny at all costs, and discuss it only when forced. Is there a right or wrong answer? My background is certainly not steeped in psychology.
In my own immediate family, we seem to have a knack for picking up conditions and diseases at a young age that no one likes to have as part of their medical history. Fatal heart disease, cancers, diabetes, neurological matters of a wide range. I could list several more. Each person handled their own situation in a slightly different way, from the flamboyant to the famously ‘if I deny this ever happened, then perhaps it did not’. I was not in a position to deny the existence of a problem, so that was not an option for me. Tempting? Yes. Why? I knew I was facing a lifelong situation, and did not want to have a label wrapped around my persona.
I chose to reveal it first to family whom I knew really couldn’t care that much. A way of practicing how to get the words out of my mouth without the emotional response from the recipients. That went well. Having family through marriage that do not communicate with each other, I knew this revealing was safe. Step Two was planned for members of my family who seemingly have no emotions. They care, but would be quite orderly in maintaining their emotions until a private moment for themselves. A wonderful plan it was. Except that I was unaware of a last-minute mini-family reunion being held at their home. It was too late to back out, as I had already announced our intentions to stop by. Complete and utter emotional destruction might describe the impact it had on some family members. That. . . was not so good. I gave up, and just let the ole chips fall where they may after that fiasco.
Soon I felt like a poster child for my situation, and was overwhelmed on many levels. I had no idea how to respond to people, their questions, anything. I quite frankly didn’t know enough to know I should probably be scared. They did, and they were.
My response became one of clamping down on information. I didn’t wish to share every symptom, all the medicines I was taking, every test I was being subjected to. I questioned peoples’ motives when word spread to family I hadn’t seen in years ~ minute details that I thought were private discussions. Soon, little information was coming out. The result? People stopped asking.
And I continued to get worse, as I was told would happen. I gave up my support team for the sake of privacy. You may say that I should have set up some boundaries. Boundaries are only as good as all parties agree to them. Years would pass, and now I was quite changed physically. My personality, the essence of who I was, had remained intact. I, however, was the elephant in the middle of the room that no one was discussing.
Today my immediate family (those I was born with) confide very little with me. Their relationships with each other, once weak, are now strong. I am now the odd one out. It is too difficult, it would seem, to accept the changes that are occurring. I had some strong words of confrontation at one point. . . and elicited absolutely no response. It was rather appropriate. I have become persona non grata. Years of very close relationships are no more. I try casual communication that focuses on the other individual. I remember every important event in their lives. . . no response.
Far more broken than anything in my body is my broken heart. I suspect the day will come when they might recognize their loss. What they are unaware of due to the distance and how the situation has evolved is that the day is already here when I can no longer maintain a relationship with them in person. The condition has deteriorated far more than anyone knows outside my own family. I hear James Taylor singing ‘Cat’s in the Cradle’, and the song is a lot closer to the end than they can see. I no longer grieve for them. I now grieve for the loss I believe they will have when they recognize they waited too long to accept me for exactly who I am.
leave of absence
