Hi, Julie ~
I think we all can empathize with your frustration and annoyance, even anger, at well-meaning family, friends and acquaintances who seem to dismiss our very real AN-connected problems as if they were no more than a hangnail. I can accept the "you look great" comment because, unless one is very obviously disabled, those internal problems many AN patients deal with; dry eye, facial weakness and so on, are mostly unseen by others and unless we want to wear a sign around our necks proclaiming our deficits, they will go unnoticed. I agree that folks making what can be considered insensitive comments do mean well. Who tells a friend or co-worker "you really look awful, today"? Saying "you look great'" is a very natural reaction when meeting someone who you know had major surgery - brain surgery, no less - and seems to be functioning just fine. No wheelchair or other appliance needed to navigate and no 'sickly' appearance. The dilemma is that, although you may not appear to be 'sick', you do have problems to deal with and being told how 'good' you look gives the perception that the other person, who perhaps should know better, is ignoring your struggle to fully recover. The unacceptable alternative is to begin a litany of the problems you're facing, and no one really wants to do - or hear - that. So, from the recovering AN patient's perspective, the "you look great" greeting morphs from a friendly compliment into a borderline insult Comments that "at least you can hear out of one ear" or that old standby "it could have been worse" may be technically accurate but still seem to indicate a minimizing of your situation.
I enjoyed an excellent recovery but I'm still SSD and carry a few minor-but-invisible-to-others remnants of my AN. To anyone I meet, I know before they say it that "I look great" considering my large AN, surgery and radiation. I simply accept the compliment, knowing that they are leaving unsaid : "...for an old guy who had brain surgery" I can guarantee you that in time, as the reality of your surgery recedes and you continue to recover, the insensitive comments relating to your surgery ("it could have been worse") will slowly but surely cease, as your circle of friends forget about it and assume you're 'back to normal'.
Frankly, Julie, I don't think anyone who has not gone through the 'AN experience' can really appreciate the stress and later physical issues AN patients deal with, sometimes for years. My wife, who refuses to be sedentary, suffers with Fibromyalgia, Chrohns Disease, IBS and serious spinal issues (many surgeries over the last 15 years). She deals with pain every day as her friends and acquaintances remark on how 'good' she looks. When asked how she's feeling (not so great, lately) she always replies: "I'm taking it one day at a time". To those who are close to her, they understand this means she's having a hard time. Others just smile and tell her how good she looks, then start complaining about their own problems, which she listens to and tries to help, when possible. She has no intention of burdening others with her physical maladies and doesn't even tell me too much about them, except when they're really bad. Her fortitude was a big factor in my recovery. I felt sheepish complaining to her when I knew she had her own physical issues to deal with. So, I pushed aside whatever issues I had (none were noticeable, except to me) and, combined with a fierce determination to regain normalcy, I was back into my temporarily-interrupted life within six weeks of my 9-hour AN surgery.
I relate all this as not only a salute to my loving wife (of 39 years) but as an indication that we cannot really know what others go through with a physical problem unless we've been there, ourselves. Thus, we'll very likely continue to receive well-meant but annoying 'compliments' and comments about how "it could have been worse" (yeah, we could be dead) from those we encounter as we struggle to recover. I have no other counsel than to smile and say 'thank you' to these comments, as my wife does and I once did, knowing that the other person has no clue but most probably doesn't mean any harm or insult, either. To reiterate, in a few months you'll likely be so far along in your recovery that no one will feel the need to remark on your appearance or remind you that "it could have been worse". I guess the best suggestion I can offer is to understand, forgive and refuse to allow other peoples insensitivity to color your attitude. As one matures, one realizes that people will sometimes be insensitive or just plain dumb, and it can be quite annoying at times. You can't control that, but you can control how much you allow their insensitivity and foolishness to upset and annoy you.
I trust you'll be able to handle this phase of your recovery with élan and go on to better days as you continue to improve and the deficits gradually fall away.
Jim
