As you may know, for the next little while we will be focusing on people in our support group, the unsung heroes of the chronically ill. In keeping with this theme, I picked up a book recently designed to help our loved ones handle the pressures of the effects of illness in their lives and how they can help us the most.
If you have followed my writings and crazy rantings for a while, you might remember that I kind of have a thing for Buddhism. And I've also discussed a few other Shambala publications in the past, mostly relating to handling abuse and negative memories. Honestly, though, I picked this book based on description. I totally didn't even know it was a Shambala book until I finished it.
Dr. Collinge has a background in alternative medicines, which I also didn't know before starting the book. While it's not a horrible thing, this explained the few chapters in the book I didn't much care for - on things like Reiki and other healing exercises. I'm not completely discounting those therapies. There are some people that are helped by them. However, from what I have investigated on my own, they are not as viable as others can be. This includes talking with Reiki healers who tried very hard to get me involved each time we met, almost telemarketer-like. It was off-putting to say the least.
Some of my favorite sections of the book include the bits on massage and snuggling. I happen to be a very touchy person, and snuggling has a very calming and pain relieving effect on me. If it's only a finger touch mine, that's enough to be helpful if the intention is there.
Speaking of intention, another section I enjoyed was chapter 28 on tonglen mediation. If you don't know tonglen, please click here and let one of my favorite authors, Pema Chodron, explain in more detail! Short version: essentially, it's a meditation practice in which you breathe in the bad and breathe out the good. It's sounds counter-intuitive, I know, but it is also a kind of healing energy. You breathe in the pains, worries, and sorrows of a specific person (or region or the world - that's a little much though!), and you breathe out good thoughts, hopes, and dreams for him or her (or them!). It's all about the intention with with you practice tonglen. Collinge notes that the idea of taking on the pain of the suffering person is a crazy overwhelming thought. Again, it's one of those things that might not work for everyone. But I can tell you from my experience that, when someone I love is hurting, this practice really helps me slow down and realize that a) their pain is not related to me, and b) I can help the most by just being there to listen and absorb and support.
One of the things I liked the most about the book is how it touches on the importance of taking care of yourself. In a caregiver/loved one role, it is really easy to ignore your issues because sometimes it seems like the other person has more pertinent issues. You don't want to seem like you're trying to complain or get into a competition on who feels worse. But remember, you cannot take care of another if you don't take care of yourself. If you spend all your time helping others, but neglect to eat right, you're going to suffer a heart attack. And then what happens to the people you help?
Section 34, to me, is the most important section of the entire book. It talks about communication and choosing the right words when you speak. I think a lot of issues in relationships where one (or both) have a chronic illness stem from communication issues. One party is afraid to speak up, or another doesn't know how to express frustrations.
One of the most important things in this section isn't even a recommendation, but a list of results from a study on relationships and illness. Patients in the study seemed to respond best when their partners shared their own feelings and concerns, used humor to relieve tension, and be present in that moment and those feelings without jumping ahead to how to fix everything. Other studies point out that women with breast cancer say that they feel more connected with their partners when they express their feelings on the patient's illness, and that they do better with partners who can empathize with them and could make it through emotional conversations. Less communication between patients and their partners surrounding illness seems to be destructive in a relationship as well.
The section goes on to talk about the bonds that are formed when those with illnesses disclose their feelings, essentially bearing what may be their most vulnerable and intimate parts/thoughts to partners. That's probably part of why the thought of doing so is so intimidating and scary. Being a partner is about sticking through the good and the bad - if a partner doesn't know all of the bad, don't expect him or her to really stick around for the good. To be honest, sometimes I wonder if my boyfriend and I would still be together if I hadn't started this blog and begun to show the weakest, most vulnerable parts of myself. It's an ongoing process, obviously, and can't be done overnight. There are still parts of me that I have a hard time sharing, and the same goes for him. But we work on it, and that makes it work.
In some of the following sections, Collinge makes reference to the importance of thinking positive along with your patient/partner. In doing that, it helps to appreciate the things you can do together and with each other rather than what you miss doing. If I dwell on the fact that I can't run anymore, my pain seems to be worse. It's just simple as that.
The rest of the book talks about ways to improve relationships centered around illness, from enjoying some good tea to running a spa like bath for your sick chick *hint hint to my handsomest blog reader*
One of the interesting things I'd like to touch on is on sleeping... separately. The boyfriend and I live in a two bedroom apartment, which sometimes gets me crap from my friends who think it's weird. Sometimes it's hard for me to handle too, because I SO much love to snuggle and it really helps me feel comforted, especially at night. Sometimes (like the night I'm writing this for instance!) it's a good thing, because my energy at someone's bed time is a little too high for sleeping. I also have a hard time hearing my alarm in the morning and then hitting snooze A LOT, which I know really can be extremely annoying... It is from the other room anyway I'm sure :) Collinge actually recommends sleeping alone. It can help, especially illnesses like fibromyalgia that are heavily affected by loss of REM sleep. And it doesn't really hurt that it limits my exposure to someone having a cold or something like that, should that happen.
Overall, I think that much of the information in this book is going to be so so helpful for partners and loved ones of ill people. I might not agree with everything in it, but even as a partner to a non-ill person (he's so much better than normal by any means :) ) I found the tips helpful and easy to relate to, just for everyday life. The biggest things to take away from the book are that communication is even more important in illness-related relationships, to try to stay positive, and that a care giver/loved one HAS HAS HAS to be able to focus on their own health as well. If you're not there to support me on my hard journey, who is going to do it you know? Sometimes I can be distant - we all can - but I really do need you around and I so much appreciate everything that you do to help me, more than you'll ever know.
If you're interested in the book, use the info below to find it!
"Partners in Healing: Simple Ways to Offer Support, Comfort, and Care to a Loved One Facing Illness" by William Collinge, PhD. Published in 2008 by Shambala Publications, Inc. ISBN: 978-1-59030-415-0