And most of all, to non-disabled people who know people with conditions like this -- please don't recommend treatments to us. We know you're trying to help, but when you do this, you participate in what's known as "othering" by pointing out the things that are different about us and making them an exclusive topic of conversation, which keeps us from being seen as, y'know, regular human beings who can and should be empathized with. Further, it indicates that you think we (and our doctors) don't have any idea what we're doing about our own health. We're doing the research, we're making an effort, and we know ourselves. However enthusiastic you are, just please don't share these things unless we've specifically asked for it. It helps spare us extra frustration. <3
Moving forward. I thought to illustrate these ideas I'd share some of my own experiences with alternative medicine. It might also be kind of humorous/interesting for you -- I can appreciate that now that I'm through it.
So, my pediatrician was very accepting of alternative and non-Western medicine forms. Again, this isn't a bad thing. However, at times it seemed to get in the way of proper diagnostic channels. When I was in sixth grade or so, it became clear that something was up with both me and my youngest brother (as also noted in this post.) At that point, a lot of alternative treatments were thrown my way to combat what we simply knew as "weird anxiety weirdness" (we had a theory it was Sensory Integration Disorder, looking at what would turn out to be pre-fibromyalgia and OCD in me and autism in my brother). Why didn't I go to any regular mental health help? Well, I think partially because my brother was being taken more seriously at the time, which is fair and warranted. His was worse.
Instead we turned to other more accepted forms of anxiety management. Nothing properly medical, still, with the focus being on my brother, but my mom and I put together a pack of "calming" things -- a slice of my baby blanket and a bunch of lavender is all I recall -- that I carried around at school in a dark blue fanny pack. I also, so you can get this image properly in your head, was just teaching myself how to walk like a normal person (instead of on my toes due to pre-fibro pain in my heels), wore fake jeans (because my fingers bugged me enough to keep me from putting normal ones on), had just fully hit the wonders of puberty (making me, among things, look like I'd dyed my hair because the darker shade I have now was coming in at the roots), and still wore glasses. I wince to think about it now. But that kit did work for me til seventh grade, when I realized the depths of my abnormalness and went on a crusade to "fix" myself. No more fanny packs, toe-walking, or fake jeans.
After that, alternative medicine and I had a break for a good long while. I did yoga on my own for a while, and still do on occasion, but I count that more as exercise personally. It wasn't until I developed full-blown fibro in tenth grade and was in the process of seeking both diagnosis and treatment that I returned to that realm. And that was an adventure.
As we struggled and struggled to find answers, I went to all kinds of places seeking help. Even after my diagnosis, my doctor sent me to lots of alternative methods because she was leery of putting me on opiods (which I agree with for at least my level of pain) and my mom was leery of antidepressants. I took NSAIDS for a while, but those are generally ineffective for fibromyalgia and ended up giving me such an upset stomach I could only eat Jello for two weeks. I went to physical therapy, which isn't designed for fibromyalgia, although they did get me a TENS unit that I use on bad days. Then I did massage, which didn't work long term because it essentially moved the pain from inside my muscles to on my skin. Applied heat works decently for me, but it's not viable when you're in pain 24/7. I tried a bunch of supplements that did nothing and went gluten-free my first year at college, which only helped minimally with related stomach upset.
The weirdest one we tried, though, was an alternative masseuse that we went to in between physical therapy and the regular masseuse. It was exactly one appointment and it was so awkwardly horrible I was in tears and laughing by the time we got in the car afterwards. The lady was German, I believe, and she did a "gland" massage, which basically consisted of her having me undress and then poking at my tonsils and other random glands on my body. While she poked, she went on and on about the evils of American life and how if I wanted to be cured, I needed to stop consuming any kind of milk product and instead go out in the woods at night in the snow and chop wood. Did I mention cold severely exacerbates (at least my) fibromyalgia? I am not making any of this up. I was so flabbergasted I spent the next thirty minutes laughing and crying in equal measure.
But in any case, irrelevant to the details of my experience, it's important that you take control of your own medical health the same way you need to take control of your counseling situation. Trust what feels right for you, do your research, and be smart about it. People have different results, different experiences. This is just mine. Now, of course, teens are going to have less control than adults, but you can still do your homework. Communicate to those who do have the power, parents, doctors, etc., about what you need and what you'd like to try. It'll help you so much to have that kind of involvement, for now and for the future. Stand up for yourself, all right? You deserve it. And it might not pan out at first, but at least you'll have establish that pattern for the future. Stay safe, stay strong. <3 And again, to the rest of y'all -- let us take care of ourselves and be independent. We'll ask when we need help. Otherwise, you negate the power of our own ability to act. Let us live our lives!
Images via projectcitizenship.com, allaboutyou.com, and laurievarga.com.