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10

Mar

Public Service Announcement

Posted by steph 

The following appeared on the Feministe website in August, 2008, and really struck a chord. Anyone who suffers from debilitating and/or incurable illness has dealt with unsolicited medical advice from otherwise well-meaning individuals. The author of the article – Amanda – really drives the sentiment home.

PSA
Posted by: Amanda W, who has a blog called Three Rivers Fog.
August 5, 2008

Some commenters touched on the subject in my previous post and I wanted to open up a thread to talk about that particular bent in the conversation.

Often, when someone learns that another person lives with some sort of medical condition, slight or severe, their first reaction is to suggest to that person some way they could make their condition better.

On behalf of all those persons, let me say: Stop.

Think.

That person has had that condition for months, years, or even their entire lifetime. You, on the other hand, have possibly heard of that condition — and possibly not! — and certainly have no experience living with it. Maybe you know someone else who has it, and maybe that’s a person you actually know fairly well (but that is a very small minority out of those who make these comments).

Which of these two people, do you think, knows a broader range of treatment options for said condition?

Don’t you think that person has already tried more treatment options than you even know exist?

And don’t you think, therefore, that such a suggestion is a bit of an insult to this person, who has, more than likely, struggled and fought with their condition for years already?

How do you think this person feels when sie has to tell you — especially if you are someone who is dear to hir, like a friend or family member — that sie has already tried that and it didn’t work, or sie has done the research on that treatment and it’s total bunk? Or that hir condition doesn’t work the way you think it does, and it’s actually caused hir a great amount of harm to try to think of it that way?

Maybe one time in fifty, you are bringing to light a treatment that this person was not previously aware of. Those other forty-nine times, you are putting this person in a bad spot, having to refuse a well-intentioned suggestion without insulting you in the process.

Certainly, you were only trying to be helpful. Sie knows that.

But maybe, if you thought about it a bit more, you would realize that if you really want to help this person, you can start by not insulting hir intelligence.

I have encountered these well-meaning people many, many times. They suggest this diet, or that exercise program, or this doctor, or that web site. But what they are doing in actuality is acting on the assumption that I have not put effort into learning about my condition, what causes it and how it works, and spent a significant amount of time looking into all of the treatment options, and continually trying new ones in an attempt to find something that works in my life.

And I know, I know you are trying to be nice. But having to confront people over and over again, especially people who are only trying to be nice!, with the facts about my condition and how it has affected my life, gets tiring after awhile, and makes me feel like a rotten jerk.

And I can tell you from experience, having talked with other folks with a variety of conditions, that I’m not the only one who feels that way.

So, again: Stop. And Think. Disability in particular, but illness in general, are subjects that are never really examined on a deeper level in mainstream society. This means that you have most likely been taught mechanisms to deal with the subjects that are very broad and superficial. But if you are serious about facing up to your own privilege and being a friend to those people without it, you will put a little more thought into the assumptions you rely upon when approaching these issues. Trust me, it will be appreciated.

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Don't Have Endo? Please Read!

  • The Letter From Survivors

  • Public Service Announcement!

  • We Are Not Seekers

  • What I Should Have Said

  • "...but have you tried..."

  • Sick Humor: The top ten worst
    suggestions commonly given to
    someone with a chronic illness


  • Our Life In Comics

Important Pages

  • Endopaedia

  • Research and Medical Journals

  • Myths about Endometriosis

  • YouTube Video Blogs

  • Applying For Disability

  • Be Aware!

  • Endo and Menopause

  • Is Endo A Cancer?

  • Job Discrimination

  • Fallen Endo Siblings

Mankoski Pain Scale

0 - Pain Free

1 - Very minor annoyance - occasional
minor twinges. No medication needed.

2 - Minor Annoyance - occasional
strong twinges.
No medication needed.

3 - Annoying enough to be distracting.
Mild painkillers take care of it.
(Aspirin, Ibuprofen.)

4 - Can be ignored if you are really
involved in your work, but still
distracting. Mild painkillers remove
pain for 3-4 hours.

5 - Can't be ignored for more than 30
minutes. Mild painkillers ameliorate
pain for 3-4 hours.

6 - Can't be ignored for any length of
time, but you can still go to work and
participate in social activities.
Stronger painkillers (Codeine,
narcotics) reduce pain for 3-4 hours.

7 - Makes it difficult to concentrate,
interferes with sleep. You can still
function with effort. Stronger
painkillers are only partially effective.

8 - Physical activity severely limited.
You can read and converse with effort.
Nausea and dizziness set in as factors
of pain.

9 - Unable to speak. Crying out or
moaning uncontrollably - near delirium.

10 - Unconscious. Pain makes you
pass out.

© Andrea Mankoski

Organisations

  • Endometriosis Association

  • Endometriosis Research Center

  • endometriosis.org

  • World Endometriosis Foundation

  • Center for Endometriosis Care

  • World Endometriosis Society

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  • EndoQueer

  • The Endo Coalition

  • Endometriosis Foundation of America (EFA)

Symptom Tracking

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    - Compare symptoms with people like you,
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    health


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    analysis. Community.


  • MyMonthlyCycles.com
    - free personalized tools to track, monitor,
    and manage your mo nthly menstrual cycles!

Endo Products


  • Naturally Hip
    - cloth menstrual pads

  • EndoFEMM
    - Microwavable corn-filled cloth heating
    pads. (mention you saw them here and get
    10% off your order!)


  • Endo Awareness swag
    - As found on Etsy

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