Annalisa ~
Your frustration is, as the previous posts indicate, all too common with AN patients and others with 'hidden' physical deficits. Although my post-surgical/radiation issues are relatively few and minor, my wife suffers from Fibromyalgia which is 'invisible', nerve pain from long-term spinal problems (she's had 3 spinal surgeries), Crohn's disease as well as other issues she has to deal with on a daily basis. She works around her limitations and I help out around the house as much as possible, of course, which is easier now that I'm retired. This allows her to led a relatively normal life - and she rarely complains. However, her situation and my own experience as an an AN patient has given me more understanding and definitely more compassion toward those who 'suffer in silence' from conditions that are invisible to others.
It's quite understandable that you'd like a bit more understanding from your husband and family but, alas, that is often hard to find for many post-op AN patients. My theory is that, with some exceptions, most people have a finite amount of compassion and concern for others physical problems. This seems to be especially true for spouses and immediate families of post-op AN patients. This is why the standard, expected response when we're greeted with "How are you?" is "Fine". Illness and pain are not something most people really want to hear much about and of course, most adults have problems to deal with that are important to them, making their understanding of your physical problems lower on their priority list, as it were.
I would suggest that you try to let your husband and family know (in a non-accusatory manner) that you're still struggling with post-op deficits and that you aren't 100% recovered. Using the term 'brain surgery' often helps the otherwise apathetic family member sit up and recognize that you didn't have an appendectomy or your gall bladder removed, but a benign tumor in a very difficult-to-access space in a crucial area of your skull and that the ramifications of that surgery are long-lasting. The point is that you're struggling with SSD and other deficits that affect you in many ways and just because you aren't in a wheelchair or bedridden doesn't mean that you're perfectly fine and that the AN surgery has no bearing on your life, today. If you can relate this in a non-emotional but cogent manner, it might help. Of course, everyone is different and this approach might avail you nothing but it seems as if your spouse and family are oblivious to your physical issues and the emotional toll they take and I have to believe that, were they to face reality (through you) they might cut you a bit more slack and offer more help and/or understanding. Perhaps not, but I can't see the harm in at least letting them know that you're struggling both physically and emotionally and could use their help.
Meanwhile, know that most of the folks using these forums know exactly what you're dealing with. You'll be in the thoughts and prayers of many - because we care about you.
Jim
