Monday, July 6, 2009

Disability 101: ABs/TABs Suggesting Treatments to PWDs

I suggested a treatment/”cure” to a PWD for her/his/zie’s condition, and they ignored my suggestion/did not throw themselves at my feet with gratitude/got upset. Why? I was only trying to help!

Many able-bodied people, perhaps in a spirit of wanting to help those they know who are in pain, disabled, or chronically ill, may suggest different treatments or ways that they believe the disabled person should use to “get better.” Many PWDs and chronically ill people, however, have experienced this exact process before, and often to the point where such “well-meaning” pieces of advice get...well, annoying; a stranger, acquaintance, co-worker or relative might suggest something that has been suggested many times before. Such “well-meaning” suggestions may imply some very different things to the PWD/chronically ill person, namely:

...that they cannot be trusted to manage their own health, disability, or course of treatment. Many people with disabilities and chronic illnesses have found treatments that improve their quality of life. Even with these treatments, they will probably still remain disabled/ill; the treatments that they have worked so hard to find, additionally, work for them. It is not your job, whether you are a friend, relative or other person concerned for the PWD’s “wellbeing,” to bombard them with suggestions for different treatments, or push them to “just try” treatments (some of which may even be questionable in their effectiveness). There is a long history of PWDs and chronically ill people being forced into undergoing treatments, into hospitals, and even into institutions by able-bodied people who presume that those with the health problems are not pursuing the “right” kind of treatment, and that this must be corrected—even at the expense of the PWD’s humanity. Unless you are a professional, doctor or other specialist working with the PWD, and/or unless the treatment that they are undergoing is actively damaging their health, it is probably best to keep your recommendations about what course of treatment that you think the PWD should be undergoing to yourself.

...that you are frustrated by the CHP/PWD's inability to get better. You may not say or even think this outright, but in some cases, actions speak louder than words.

...that you want to be given cookies/be thrown a parade/told you are fantastic for suggesting something that, in actuality, has probably been suggested to the PWD/chronically ill person many times before. In its more severe forms, this tendency is known as the “savior” or White Knight complex. Here’s the problem: Disability, chronic illness and pain, for the most part, are not things that can be cured. They can be dealt with, but it is oftentimes up to the person with the condition—-with appropriate support from family and friends-—to decide which treatments he/she/zie would like to pursue. Though you might like to, you cannot be the PWD’s/chronically ill person’s able-bodied savoir. It is not the job of PWDs/chronically ill people to make you--an able-bodied person--feel better about yourself, whether by following your every treatment-related suggestion, or being uber-thankful whenever you deign to offer well-meaning advice that is related to their condition(s).

In addition, finding the right treatment(s) to improve quality-of-life can be a long, tiring, and agonizing process for many persons with disabilities, chronic illnesses, or health conditions (including mental health conditions). For many, starting an entirely new treatment for their condition(s) would, on some level, entail starting all over again; since getting to the point to where they are able to function and where their quality of life has been improved takes a long time, do you think that many PWDs and ill people would want to start from square one again to “just try” a treatment that’s been suggested, offhand, by a “concerned” person in their lives, that might not even work for them—-or that, in some cases, may make them worse? Because of each individual’s limitations when it comes to things such as time, finances, energy, tolerance/intolerance of additional discomfort or pain, or medication/treatment side effects, starting over with a “new” treatment might actually be a huge inconvenience for some people with disabilities or chronic health conditions.

39 comments:

Jennifer said...

How very true. Thanks, I feel vindicated. :)

Erbs said...

I loved this entry! It speaks the truth. One of the worst things an able-bodied person can say to a person who is not able-bodied is "Why don't you just...?" The "just" implies the solution is simple and was there all along. For example, when I told a classmate I have fibro, she said, "Why don't you just take Lyrica? That's what my grandma takes." I was so upset that I did not even want to explain to her that I have already talked about Lyrica with my doctors. Anywho, thank you so much for this wonderful blog! I truly appreciate the thought and effort that goes into crafting your posts. Keep up the excellent work!

Ettina said...

Then there's the added thing that with some conditions, the person might not want to be 'treated'. I like being autistic, and find the idea that autism needs to be cured offensive. For awhile, a second cousin of mine was in the habit of suggesting various 'biomed' (ie quack) treatments for autism to me, and I found that upsetting.

Jeanne said...

Annaham,

I found this post via the FWD/Forward blog (reprint) post.

This is an excellent description of what it feels like to have "well-meaning" people make "suggestions" (which sometimes sound more like commands) for trying various treatment options that may well be unsafe.

It is insulting to patients who invest enormous time and energy into managing their condition(s) to have someone presume they have "the answers" that the patient somehow overlooked or wasn't resourceful enough to find.

To be clear, I'm not suggesting that I don't appreciate when people make suggestions to me because they are sincerely concerned and trying to help.

I am talking about those with the White Knight complex... who literally get offended if the patient (me) doesn't enthusiastically "sign right up" for their idea.

Great post!

Jeanne

P.S. Fibromyalgia is one of the many chronic illnesses that I have. It has been a rough fall for fibro (weather-wise) in my part of the country. Also, I took a peek at your profile and see that you are a Tori Amos fan. I LOVE TORI AMOS!!! I met her backstage on the ADP tour in 2007 (one of 4 times I've seen her live). You can see me with her backstage on my blog if you like. Just see the "music, art, fun & inspiration" page of my blog to see Tori. :)

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