Unsolicited advice for those of you recently diagnosed with Lynch…please be sure to talk to a certified genetic counselor about your particular mutation! Please go to nsgc.org to find one or reach out to me and I will help you!
I know you feel imprisoned by your DNA and feel completely helpless right now. Give yourself time to scream, cry, be pissed, throw a pity party – I will bring the booze – and then process the information you have been given. Then, take control of your life. First, find out all you can about Lynch, seek information from medical journals if you can, or look up websites from reputable hospitals – do not solely rely on the Internet for information, you would be better off reading off the back of cereal boxes. FIND DOCTORS THAT HAVE CONDUCTED LOTS OF RESEARCH ON LYNCH CANCERS AND HAVE WRITTEN SEVERAL PAPERS ABOUT THEM and try to surround yourself with them if you can. You must seek them out, they will not magically appear to you. Make sure you fully understand the implications of what needs to be done in regards to tests, or surgeries. Question your doctors about things you may not understand and if something does not work for you, then tell them.
Find yourself a therapist that specializes in people with genetic disorders if you can. Tell your internist, or get a psychiatrist, if you start to feel depressed, have difficulty sleeping, or if you are overwhelmed with anxiety – they may help you with meds to get through this transitional period – it is okay to feel these things, how could you not? With time, things and thoughts do improve but there will be good days and bad days. I do not want to become an emotional vampire for my friends, so I tend to reserve my Lynch conversations for my therapist – it is too much for you to process, let alone your friends. Consider alternative therapies like acupuncture. Take care of yourself, eat well, exercise, find ways to deal with your stress, and most importantly, build a stronger connection with your divinity. Reach within yourself for strength, no one else will be able to give it you. Most of all, surround yourself with people and things that make you feel alive, content, and give you peace. Get rid of the toxic people and toxic crap in your life. You have enough to deal with and you certainly do not need any additional stress. Besides, getting rid of toxic people will (hopefully) open the doors for more positive people to enter your life.
If you are close to someone with Lynch and they are willing to discuss their issues with you, try just listening to them, you do not need to fix their problems, just listen. People always asked what they could do to help me after my surgery. I would respond with things like, “wash my car,” or “clean my fridge.” No one likes to tell others what they want, then again, I may be the exception. What I found most helpful were the people that took the initiative to help – some friends dropped off food, others were willing to take my son for the weekends, some would just come over to hang out and lie in bed with me. My favorite thing of all was when my husband made a schedule of my required three walks a day post surgery with my different friends for a week – I got a kick out of walking around the block in my pajamas and robe and holding on to my supportive friends. Words cannot express my gratitude for all the things people did for me and continue to do for my family and me.