Showing posts with label illness. Show all posts
Showing posts with label illness. Show all posts

Tuesday, May 18, 2010

New post on Functional Movement Disorder and Conversion Disorder

My latest blog post addresses Functional Movement Disorder and Conversion Disorder from both a personal and a more impersonal perspective.  I've especially outlined some of the issues with Conversion as a general diagnostic category and the problems with directly equating it with FMD.
The comments are interesting - someone has already asked about rates of diagnosis by gender, which adds another wrinkle to a complex, confusing, and controversial issue.
Come join the conversation if you like!

Wednesday, May 5, 2010

What Not to Say

I thought it'd be a good idea to kick off with a list of what not to say, gleaned from our Chronic Bitches group on Ravelry. This is obviously not a complete list, and if I have forgotten anything or mislabeled, please let me know and I will fix it. Where possible I included appropriate responses.
There is even a handy code, indicating to what illnesses these usually pertain and those who are to blame.
A=Arthritis
D=Depression
Fa=Often perpetrated by family
Fi=Fibromyalgia
Fr=Friends
M=Mobility issues
P=Physicians
R=Random strangers
  1. But you don’t look sick. A, Fi, Fr, R
  2. Well, if you’d just get some exercise… D, Fa, Fr, M, P, R If you can show me an exercise I can do without further injuring myself, I'll do it.
  3. You just need to take vitamins. Fr, R
  4. I’ve found this great supplement that even cures cancer…you should take it. Fr, R
  5. That kind of diagnosis is just a cop-out. ___________ doesn’t really exist. Fa, Fi, Fr, P, R
  6. You just want attention; there’s nothing wrong with you. D, Fi, Fr
  7. Well, just ignore it when it hurts. Fr, P
  8. Why don’t you take a pill for it, then? Fr
  9. You’re faking this for the insurance money/to be annoying/for attention. Fi, Fr, R
  10. Oh, that doesn’t really bother you. Fr
  11. You need to see a different doctor. Fr
  12. You're too young to have this many things wrong with you! A, D, Fi, Fr, P, R
  13. If you would just be more positive about things, you’d feel better. D, Fa, Fr
  14. Admitting you're sick is admitting defeat.
  15. You really shouldn’t joke about that. R
  16. Have you tried praying? A, D, Fa, Fi, M, R I think I will stick with my doctor's recommendations and science.
  17. It’s all in your head. D, Fi, Fr, P Damn right! It's migraines/mental health problems/fibromyalgia, where else would it be?
  18. I had a _____ (second cousin, friend of a friend’s friend’s friend, fellow gym member, etc. never anyone close) who had what you’ve got. They stopped eating __________ (evil food of the month club: gluten, dairy, chocolate, red meat ad infinitum) and were completely cured! You should try it! R
  19. You just need to lose some weight. Fa, R If you can show me an exercise I can do without further injuring myself, I'll do it. Yes, because my allergies/mental health/chronic pain are a direct result of my weight. Logic fail.
  20. I don’t believe in _________ D, Fi, Fr
  21. You learned that from your mother. D, Fa, Fr Funny, I didn't realize that diseases could be learned behaviour.
  22. You just need to gain some weight. Fa, R
  23. Hormones can affect your emotions and perspective.
  24. You’re too young to apply for disability benefits. Fr, M, P My medical condition is a better indicator of my disability than my age.
  25. You really aren’t that sick. I have patients much sicker than you are. P
  26. Have you tried holistic options? Fr Many, but that's between my doctor and me.
  27. Could it be your stress? Fa, Fr According to my doctor, it's my illness.
  28. Have you tried (insert random medication advertised in magazines/TV)? Fr, R My doctor and I explored that option when it first came out, thank you for your inexpert opinion.
  29. Have you thought about being in a trial study? That's between my doctor and me.
  30. Wow, if I were you, I don't know what I'd do. I'd probably kill myself. M Gee thanks.
  31. Have they found what's causing the problem? No, my doctor is an idiot.
  32. Have you tried hypnosis? I'm still sick, but when the phone rings I bark like a dog.
  33. Have you researched your illness? No, I have absolutely no idea what's going on and am completely clueless.
  34. Have you tried anti-depressants? Fa, Fr, R
  35. I wish I had a disability badge. Fa, Fr, R If I broke both your legs, you could.
  36. What do you do all day? Fa, Fr, R
  37. If you stopped taking that medication, then maybe you wouldn't be so ill. Fa, Fr Sorry, I'm just a little attached to living.
  38. There are people worse off than you are. A, D, Fa, Fi, Fr, M, P, R
  39. Cheer up! D, Fa, Fr If I could, I would.
  40. I’ll see you in six months. If you’re still short of breath then, I’ll see what I can do. P
  41. Boy, I’d like to be able to take early retirement. Fa, Fr, R
  42. With your education level and experience, you should be able to do something. Fa, Fi, Fr If I could, I would.
  43. Why don’t you take care of it since you don’t have anything to do–after all you’re not working. Fa, Fr
  44. If you’d think about something else, you wouldn’t notice the pain. Fa, Fi, Fr, R
  45. The pain always stops on its own eventually. Fa, Fi, Fr, R
  46. You could do things if you really wanted to. Fa, Fr, R I don't see you running any marathons, either.
  47. Sexual side effects are a small price to pay for feeling better, right? Fa, Fr, P The one thing that still works is the ability to love and be loved in return, and you want to take that away? How is that "better"?
  48. You should moisturize your skin. I know because my son had eczema as a baby.
  49. Panic attacks are just one more way to draw attention to yourself. Fa, Fr Wait... What?
  50. Well, but it’s not that bad - at least it doesn’t kill you! Fa, Fr No, but I might kill you if you ever say that again.
  51. Oh man, tell me how I can get a vest so I can sneak my dog into places too! Fa, Fr, R I'll break both your legs for you so you can.
  52. I know just how you feel! (Insert long unrelated story here). Fa, Fr, R
  53. But you can walk - you don’t need a wheelchair. Fa, Fr, M, R
  54. I would hurt too if I laid around all day and whined! Fa, Fr
  55. When are you going to be normal again? Fa, Fr Normal is just a setting on the washing machine. It has no application to human beings.
  56. You should be grateful I work and can pay your disability benefits. It’s people like me who make it so you don’t have to have a real job. Fa, Fr, R You think that I would prefer to be housebound by (debilitating condition) rather than have a job outside of the home?
  57. You should count your lucky stars that you are healthy and able-bodied instead of a healther-than-thou asshat.
  58. Just drink some water, you are probably dehydrated.
  59. You don’t look blind. R
  60. Why do you hurt? What did you do to yourself? Fa, Fr
  61. What do you mean you can’t do x?
And if you find yourself at a loss for words because of some idiot, just kick them in the taint.
Here are a couple of other lists posted by Chronic Bitches:

Hi, my name is SLiver of Jade and I will be your hostess

Well, at least one of them, anyway. When I have internet access (which can be sporadic), I'm over at Witchy Woman. The listing at the top of my blog can give you a good idea of my vast interests over there. For the lazy, I am a dirty, filthy, hippy liberal Pagan.
As a result of social conventions, I, like so many, am unaccustomed to talking about my health. There will undoubtedly be more on this to come. I have dissociation, borderline personality disorder, possible anxiety, un-diagnosed respiratory issues (various doctors have asked me, "How on Earth do you breathe?!"), post-traumatic stress disorder, screwed up feet and ankles that have mostly been fixed, and depression. The jury's still out on the anxiety and exact flavour of depression.
What am I going to contribute? You're just going to have to wait and see.

Tuesday, May 4, 2010

Greetings

I go by Shoveling Ferret in my online life, just because I like the name.  It reflects my archaeological training and my ferret-like nature.
My chronic-ness is Hashimoto's thyroiditis, undifferentiated connective tissue disease with a side of arthritis in the hands, sleep apnea, chronic fatigue syndrome, delayed sleep phase disorder and, brand new to my collection and a diagnosis that took 2 years to arrive at - Functional Movement Disorder.  I have involuntary movements and ataxia (trouble walking) that led to testing for MS, Huntington's Disease, evaluation for various other genetic disorders, cancer, and various other degenerative conditions.  A consultation with a movement disorder expert recently led to the diagnosis of Functional Movement Disorder - essentially a condition in which a patient exhibits functional neurological signs/deficits such as involuntary movement, tremors, ataxia, etc. without a clear underlying cause.
Some other terms include hysteria, Conversion Disorder, Psychogenic Movement Disorder, and Somatoform Disorder. 
Unfortunately, those terms don't really take into account the full picture of the disorder which seems not to be caused by purely psychological factors or lack of insight into psychological conflict or psycho-social stress.  Instead, the disorder seems to be related to a combination of medical, psychological, and social factors.  There is evidence of changes in the way the brain functions (which is distinct from differences in brain structure or evidence of disease or degeneration).
In any case, it's a very complicated condition fraught with a lot of disagreement over models of causation, treatment, categorization, etc.  Happy fun times.

Amazingly, dealing with chronic "organic" illness and its associated suck has also tossed some situational depression my way, so I deal with that as well.

Given my recent Dx of Functional Movement Disorder, which is equated by some with Conversion Disorder and other disorders that are traditionally regarded as more "psychological" or "in the mind" than "organic" I have an interest in concepts of mind and body in medicine (and a bit of a grudge with Rene Descartes for saddling us with the mind/body division that contributes to difficulties in describing, understanding, and treating issues like Functional Disorders). 

I blog semi-regularly on my own site (link in the sidebar) about my health, crafting, Egyptology and other bits of randomness that strike my fancy.

I'm hoping this blog as well as my own will be a good place to share some musings on Functional Disorders and the intersection of psych and neurology as well as a resource for other people dealing with issues similar to my own and to help educate people about these types of disorders.