The first generation is all about DISCOVERY. Their challenges of the unknown are undoubtedly difficult. Seeking answers from the countless different Specialists and the battery of bloodwork has to be exhausting. It took my family over a decade to discover a diagnosis for my father. But with advances in medicine changing so quickly now, it is less likely that the future first generations in families will face this same fate. It will still be difficult and daunting and filled with lots of uncertainty until they receive a positive diagnosis, but as more and more genetic tests are becoming available, hopefully their road to discovery won't be quite as agonizing.
The first generation of family sufferers still have the burden of informing their family about their discovery. Once they've received the information, they then need to understand how their genes impact the rest of the family. How will it impact future generations? How will you tell them? Families are already complicated enough, but adding this kind of impact could certainly change things...for the worse, or perhaps, for the better. I have seen families drawn closer together because of the leadership of the first generation in bringing their information to unite the family. From their perspective, their are few people in their lives (other than family) who can understand their condition and how they need to cope with it. Family understands everything perfectly. That's not saying that all of the family is accepting it, but they certainly understand. Some family members may chose to rarely talk about it while others may become advocates and chose to be very vocal. The commonality behind their genes unites them, they understand. They perhaps could chose to cope with the same challenges differently, and that's okay.
The second generation of the family will obviously be younger and in my family's situation, are more proactive. For our particular genetic condition, the onset isn't until young adulthood. Therefore us "kids" are all full-knowing of the genetic condition (few of us have gone through the predictive genetic testing) and believe that it could impact us very differently than the first generation. Because of continuous medical advances and treatments, our outcome does not necessarily mean it will be identical to the first generation's. We have more knowledge of what to do to lead a healthier life and also for what to avoid because of the possible dangers.
The KNOWLEDGE of the second generation is the difference as compared to the first generation. But it's what the second generation DOES WITH THAT KNOWLEDGE that will make all of the difference. If they chose to ignore the information and pretend there is no risk, they are living in denial. If they accept the knowledge without making drastic and radical life changes, they're content with their life. And then others could argue that the knowledge of the genetic condition could change their lives dramatically, switching careers, ending marriages, living in isolation. The fear of the unknown for this generation is their greatest challenge.
This generation also has the added burden of having to decide whether or not to have children because of this knowledge or if they already have children, how do you tell them? When do you tell them? Do you have your children tested?
The one thing that I have learned through the years is to respect each family member's own way of coping with the news. I truly try very hard not to be judgmental about their decisions. (I may be more judgmental about other decisions they make...but when it comes to the genetic component, I try REALLY hard!) I am not living their life. We have this one thing in common, but the rest is THEIR life. Each member of my family has handled things differently and I can say that nobody is doing it right or wrong. As long as families are UNITED and show each other love and respect, the family's support could be the strongest component of having the same genetic mutation.
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