Dear Sue,Great question. I just got back from dropping my son off at school and was listening to Carolyn Myss on the way back. Although I feel awful and planned on going back to bed as soon as I got back, just hearing her voice put me in a better mood. Interestingly, instead of going right back to bed, I am here responding to your post, so one can not underestimate the power of alternate healing approaches. However...
Although I am sure your sister loves you very much, she probably doesn't have a clue.
You stepped into an area that I think many of us deal with on a daily basis. I think that the people that are around us are so confused about our state of being. And, until someone walks in our shoes they will never understand the severity of our pain and limitations.
I believe that they fall into several categories:
Don't understand, but try to be supportive and helpful without offending our own sense of capabilties towards our recovery.
Frightened to the point of panic and mention everything they come across without a lot of thought or research.
The healers are the ones who actually believe that they know what is best for us and that we don't yet have the right prescriptions, methods and/or haven't found the right doctor. According to them, we may not even have the correct diagnosis yet. They are the ones who believe that they are going play a part in finding "the cure" for us. For example, their recommendations will range from shark stem cell injections to essential oils and meditation.
Those that are in denial. They don't believe or don't want to believe that we are that sick. This group is the trickiest to deal with because this group morphs. The denial keeps them in a perpetual state of awareness without the awareness. For example, one day they acknowledge that you are sick (this may be the day that they see you puking your guts out), the next day they don't seem as concerned because "you look so good." They know something is wrong with you, but they won't allow themselves to get that close to the info. to really acknowledge the true state of your existence. Because you may have good days mixed with bad days, or as I like to phrase the cycles: I have bad days, I have really bad days and then I have horrific days (the last category is saved for ER and/or hospital visits). Because this group may have a little info, just enough, but not enough - this allows them to be the most critical of the groups. They will allow themselves to get a tiny piece of info., become an instant authority, make a suggestion, take offense when you don't jump all over this suggestion and then back away again. This keeps them a safe distance from your disease.
The ignorant don't want to know what is happening -- it is probably too frightening to them at this point in their life.
I know there are other categorical types, but I'm too confused to remember others that I have come across.
I am now just learning how to protect myself from all of the unsolicited advice. Each person will need a different response, based on their personality traits. I know that I don't owe anyone explanations, rationalizations for my treatments - it's my body and it's personal.
However, there are some who just don't give it a rest, and some are the best-intentioned. I know that some people are so sincere and genuine and I don't want to hurt their feelings. One of my best responses has become, "I can't do anything without my lyme doctor's approval, especially because I am on so many different medications."
Because our disease has not been validated, we are left defending ourselves. In addition to trying to learn how to get well, we are also learning how to respond to a society that still has very distinct thoughts and beliefs of their own about what Lyme disease is and how it should be treated.
What you can do to protect yourself is knowing that you will encounter judgements and trying to cultivate your own set of responses IF you feel the need to give a response.
From my point of view, there is no way to cure this without anitbiotics at this time. However, I also believe we need to use anything and everything we BELIEVE is useful in helping our bodies repair themselves. Meditation and counseling maybe useful for you, IF you believe in their power.
For example, for me, just hearing Carolyn Myss' voice is healing. Then if I can incorporate her philosophies into my thinking this day, they might actually inspire me in a way that nothing else could.
Most days I don't even have the energy or clarity of mind to even meditate (properly? because of all the pain meds) - nor do I even care on some days, to be honest. However, on the days that I am hopeful, capable, willing and lucid I want every single healing technique available so that I can pull it into my body and my conciousness and hopefully heal a cell or two. Then ideally, those healed cells can carry on some of the work.
I have several of Carolyn's CD's and I am absolutely fascinated by her teachings. One of the CDs I just finished listening to suggests from her research that the difference between people who are whole spiritually (even though they may be physically a mess with cancer or aids (she doesn't mention Lyme disease, but of course it needs to be included on her short list of devestating diseases) are the people who live in the present moment.
Sounds so simple, but it is difficult to do. When I really apply it to my life, I have found that it keeps me from being so pretrified and I have even risen above my pain in those brief moments.
For example, last night I was in so much pain that I didn't want to give my son a bath. Let me rephrase that. As a mother, there's nothing more that I would like to do, than to take care of my children. However, this disease has sucked the joy out of being a mother - for me on some days - I usually feel so awful that I just want to be underneath the covers and heavily sedated.
So last night, I would have preferred my husband help out with this task, but my son pleaded for me to give him a bath. I reminded myself to try to enjoy the moment - that he is only going to be young once. I did manage to enjoy it last night and as he was getting out of the bath I said, "oh please don't grow anymore." He said, "I have to - I'm a man." (He's 4, but found peachfuzz under his arms and believes he is on his way to manhood). I could not stop laughing, which is a rare event for me and I really did rise above my pain for that short time. I am so grateful for that precious moment with my son. For some reason, it will be one of my most memorable.
By the way, don't even feel like you need to educate others about Lyme disease, if you feel as though they are not truly listening. I made the mistake of trying to educate my mother once with a very interesting post here on LymeNet. She She rejected it almost immediately. She wasn't even going to try to read it. But she was able to clarify her position at that time. She was not going to be a Lyme disease advocate for me, just as she was not going to be a MS advocate for my sister. Ouch - that one hurt.
That is what she chose to believe I was asking of her when I brought that article to her attention. I was trying to get her to read an article about how sick we are and how many different forms the illness takes, because it affects so many different organ systems. She couldn't even read that article because she didn't like "the tone". Go figure. This is my mother - the person that I would think and hope to be the most supportive and least judgemental. If I had really tuned in, I would have noticed her body language - she does not want to hear about any of the politics of this disease and she only wants the facts. Her facts. As much as I don't want to admit it, this disease has affected my relationship with my mother (as well as others). How sad. One would think that it would make us closer. But it's not cancer - it's lyme disease. This disease provokes people. It's just weird.
I hope that this makes some sense and that you are able to find the treatment you need to recover your health.
best regards
paisley