Sooo today’s HAWMC post is supposed to be about Pinterest. I don’t do Pinterest. No offense to those that like it, but it seems slightly silly to me. If I like pictures, I download them or share them on facebook :-p
So instead, I will talk about a book I read recently and enjoyed very much!
After the Diagnosis: Transcending Chronic Illness is written by Doctor Julian Seifter and his wife Betsy. I’m not going to lie – I picked up the book because it has a butterfly on the cover and it was about overcoming illness. But I am very glad that I judged this book by its cover.
Dr. Seifter is a doctor specializing in liver disorders. He sees people facing many chronic and terminal illnesses. He, too, deals with his own illness – diabetes. Throughout the book, he weaves stories about his patients and handling their illnesses along with his realizations and battles with his own health.
The whole book is amazing and a very easy read. I would definitely recommend picking it up. But I’ve earmarked some of my favorite spots of the book and would love to share some bits with you that I found particularly interesting.
One of the biggest themes in the book is that the patient needs to be just sick enough. This doesn’t really apply to them physically, but mentally. If they aren’t sick enough, they might not pay attention to their health and get the treatment and help that they need. If they’re too sick, they’re probably hypochondriacs, very afraid and unable to handle their illness, or unable to see the good side to life. I think at times all patients move between these categories, but it is important to be just sick enough – to be sick enough that you know you need treatment and to be your own advocate, but to not be so sick as to alienate everything your life has been about. You have to live your life while you can. I think the following excerpt from the book hits the nail on the head, especially if you read the book and know the story around this passage:
The chief message of all this: you’re alive until you die. Every minute counts, and relinquishing hope, playfulness, distraction, pleasure consigns you to a premature death, even when death is knocking at the door. The truth is, we’re all on the same train headed for the same destination. When the diagnosis comes, forgetting it – intermittently at least – is not only understandable but sometimes quite adaptive. (150)
One of the other important points that Seifter hits is that society often blames the victim, or in our case the patient. Clearly, because we have an illness that not everyone has we must have done something to cause it – or, maybe, it’s something that we didn’t do. We aren’t juicing enough, taking enough vitamins, smoking enough crack, sacrificing enough animals… Okay, those are ridiculous examples, but so are the real world ones – if only you would take these vitamins… if only you would lose half your weight… if only you would be someone completely different from yourself… His point with all this is that we often turn that blame inward, causing ourselves undue stress – especially in chronic illnesses where not a lot in reality is known. Still’s is a form of JRA. There are a million theories as to how it starts, and anyone of them could be correct. Without a starting point, tries to cure the disease are stabs in the dark. It can be very frustrating.
There are several other really good points that he makes in this book, but I don’t want to share them all. The last one I’ll leave you with though is about couples facing an illness together – something that during the last half of March was a focus for me.
He tells the story of Mr. and Mrs. Valleros, the former of which suffers from amyloidosis. Seifter uses their story to discuss the wonderful art of being a couple and tackling illness together. He says that the “chief stumbling block to an authentic relationship is the problem of dependency” (203). It’s a delicate balance, he points out. If the mix isn’t right, the ‘well’ person can become too dominant and overbearing, or the sick person can become too dependent. This couple manages the balance swimmingly, even though Mr. Valleros is essentially dying.
One of the things that I really took to heart was Dr. Seifter’s words on illness in a relationship:
A marriage [or relationship] requires room for two, and illness tends to constrict the space. How can a couple thrive when it’s so easy to let illness close things down in ways that stunt growth and liveliness? How can the necessary collisions between two different people be fruitful rather than bruising? One way is to put the illness in its place. (205)
Another couple in this section fights the illness butting into their lives by intermittently paying attention to it and not letting the illness completely run things. The ‘well’ person in this particular relationship points out that they take care of each other. If one of them isn’t feeling well, the other is there to take care of. He also says that he doesn’t think of his wife as being sick.
And maybe that’s the key to all of this. A few weeks ago, I interviewed my boyfriend. While my illness can limit what we do – though I try my damnedest! – he doesn’t look at me and see something sick. He looks at me and sees a pretty girl who is really quirky but fun to be with and is very loving. Those are my words, but in the last few weeks he’s said as much – sometimes even verbally you guys. WHOA.
I think that his attitude, of my illness being just a fact about who I am and NOT being who I am makes all the difference.
So, getting back to the book…
You guys should read it. I teared up in spots, and was amazed by others. I found new ways of looking at my illness, and am trying to be ‘just sick enough’ instead of everything in my life being about my illness like it has been for the past few months. If this book has helped me to realize some things about myself – stubborn ol’ Taurus that I am – I can’t imagine what it might be able to do for you. At the very least, the writing is enjoyable to read and flows very well. I found myself not wanting to put it down. I don’t have those feeling often.
