By Amy, Spirochicks Contributor
This is Part II of the Professional Patient articles. For Part I, see Are You a Professional Patient?
This past summer I had an experience that made me stop and consider how my mindset might be affecting my health. I began to wonder, was thinking of myself as a chronically ill person who was constantly researching, discussing, and trying out treatments somehow keeping me that chronically ill person who was always researching, discussing, and trying out yet another treatment? Would changing my mindset to think of myself as a fully recovered person change the outcome? I don't know, but I've been thinking about this for several months now and am beginning to formulate some thoughts which I hope share with you in part III of this series.
In the meantime, since I like to have fun even though I am chronically ill, I thought I'd put together a checklist of a few things that might indicate that you're working toward becoming a Professional Patient. Kind of like those silly tests in women's magazines. Just for fun. I think these are things that so many of us Lymies relate to, so I hope you'll find it entertaining as well.
Signs you may be working on your undergraduate Professional Patient degree:
- You diagnose yourself with Lyme disease before your Primary Care Physician even/ever mentions it
- Your social life consists primarily of hanging out on the various Lyme boards swapping stories with other Lymies about treatments, herxing, and all your varied, sundry, and yes, often bizarre symptoms
- You know the history and the full name of the word “herx” (or soon will)
- You spend lots of time looking up new supplements and treatments, looking for things that will help you get well
- One of your favorite topics to discuss with family and friends (much to their chagrin) is your health and treatment
- You are starting a list of supplements and treatments you might want to consider trying at some point in the future
- You have heard of coffee enemas but can’t imagine why anyone would actually do that
- You have heard of the gluten-free, casein-free diet but can’t imagine how anyone could do that
- You have heard of muscle or energy testing but when you’ve heard how it’s done you’re skeptical, to say the least
- You know who Burrascano, Buhner and Klinghardt are, and what IDSA, ILADS and Igenex are
- You can explain all these: brain fog, floaters, red crescents, tinnitus, EM rashes, EBV and HHV-6
Signs you may be working on your advanced Professional Patient degree:
- At your first appointment with a new doctor they ask if you are an M.D. yourself
- You frequently bring in new treatment options to discuss with your non-mainstream, well-versed LLMD and s/he may have heard of it but doesn’t have any experience treating patients with it
- Your doctor often tells you that you are the first patient they have doing a particular treatment
- You have boxes and boxes of supplements, nearly all of which you have tried and all of which you know what they are for
- You are bored when anyone talks about anything other than Lyme disease, treatment options, or your symptoms and you frequently change the subject of conversation back to these topics
- You have an active list of supplements/treatments/diets/medical devices you want to try next and you are excited each time you get to start on something new to see how you will react to it
- You do regular coffee enemas and have taken to referring to them as your “frenemas”
- You have been fully GF/CF for months and months and you don’t EVER cheat because you understand the biology behind avoiding gluten and casein
- You are so reliant on muscle/energy testing that you’ve been learning how to do it yourself so you can energy test everything, from foods and supplements, to shampoo, lotion, and make-up, whatever and whenever you want
- You can explain all these: HPA axis, methylation, chelation, glutathione, cytokines, XMRV, and c4a
Let me know if you have anything else fun to add to these lists!
Interested in changing your mindset so you don’t end up a Professional Patient for life? Look for my Professional Patient Part III article coming soon!