Read about it here in today's NY Times:
Acclaimed author reveals PD & DBS
Posted 12 November 2013 - 07:25 AM
I found Ms. Boyd's comment to the author's revelation interesting. As a trial lawyer full disclosure in open court was required as an ethical duty and legal matter in my case which eliminated the 'when to come out' dilemma for me.
- Connie Boyd
I'm a writer who has interviewed hundreds of patients with many different diagnoses over the past 27 years. Every man with Parkinson's I have ever interviewed has kept the diagnosis secret for as long as he could, especially from employers and co-workers. Based on my (admittedly anecdotal) experience, it may be the most-concealed illness in America.
Edited by Rogerstar1, 12 November 2013 - 07:36 AM.
Posted 12 November 2013 - 02:29 PM
It was kind of hard to conceal for me. Everyone around me noticed the changes before I did!
I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.
Posted 12 November 2013 - 02:54 PM
Posted 14 November 2013 - 12:17 AM
Having a disease is nothing to be embarrassed about. The sooner people realize this, the sooner they can come to terms with their illness and get on with life.
In my opinion, many people choose to conceal an illness out of fear. Fear is a choice that should never be made when confronted with illness.
Edited by Jlc, 14 November 2013 - 12:20 AM.
Posted 14 November 2013 - 06:11 AM
Jlc, I disagree with you on this one. I've only disclosed my PD to some family members. It's none of any ones business what I have going on. It's not fear, just the desire to keep some things private.
Posted 14 November 2013 - 06:45 AM
1) I don't want to worry family members, especially my parents.
2) I don't want to be defined by my illness. I want to live as normal a life as possible and not be thought of as that guy who is sick.
In addition to the social and family reasons, there are also practical reasons not to make your illness public. I believe it was in the article that Dianne posted that the Doctor recommended not to be forthcoming about PD, especially with employers because that can result in negative consequences.
Posted 14 November 2013 - 10:28 AM
Sorry if I offended anyone. I guess the main point I was trying to make is that you shouldn't conceal your illness if doing so will have any type of negative impact on your life.
For myself (if I am ever freaking diagnosed), I will be disclosing my illness to everyone immediately. I will also be calling all the local newspaper and television companies to try and raise awareness.
Anyways, I guess I got a bit off point but I used to be the type of person that hid everything from everyone and never talked about my feelings. Since all of these strange things have been happening to me, I have been forced to tell people what has been going on and, in return, have received support that I never even knew I needed.
Again, not my intention to offend anyone but I'm sure living with pd is hard enough. Living with pd and hiding it from the world must be even harder.
Posted 14 November 2013 - 10:48 AM
@Jlc I used to hide my diagnosis when I was first diagnosed because of the incredulous looks I got. One person at work actually told me I didn't have it. The fact is, with more people, not just Michael J Fox, but also Brian Grant, Taylor Phinney, Ben Petrick and others coming out and disclosing has made it easier for others to do the same. I now disclose to anyone who asks why I'm walking funny or have a tremor, but it took some time. I even disclosed during my last job interview, but not until the very end and I was nervous when I did it. Luckily, my previous company and my new company have been very supportive. But that is also one of the reasons I disclosed, because I did not want the added pressure of keeping a secret to add to my work stress.
Edited by young_dad, 14 November 2013 - 10:50 AM.
Posted 14 November 2013 - 11:17 AM
I am definitely not saying that I am right because I know I don't know anyone else's circumstances etc.
There was a comment above about not disclosing to parents. If I hid something like this from my mom she would literally kick my a**.
Posted 14 November 2013 - 11:52 AM
Jlc, I'm not hiding anything. There will come a time when I will have to disclose. It's not necessary right now. What purpose will it serve? As long as I have my patch on my symptoms are hardly noticeable and truth be told, nobody cares, they have their own issues. I don't even disclose my peripheral neuropathy unless I have to. I only fess up when I have to change programs with my remote in front of someone and the observer is curious.
Posted 14 November 2013 - 12:22 PM
So, for you, it's kind of like "what's the point"?
Posted 14 November 2013 - 01:53 PM
I wasn't offended either, but not telling people about having a serious disease doesn't leave anything hanging over my head. What it does is ensure that people don't see me differently, as someone who is "sick". The ugly truth is that healthy people don't want to hang around with people that are constantly talking about being sick. Healthy people are busy going about their lives and if you want to be part of their live, you've got to be able to keep up, or at least not be constantly talking about sickness. What I'm talking about here is more a state of mind than a physical state. For example, from her posts, I'd venture to say that Dianne has a pretty nasty case of PD, yet there isn't a person on this forum that puts forth a more positive and healthy attitude. She would fit right in with any crowd of healthy people, because she pushes forward despite her illness.
The last thing I want in this world is for family and friends to think of me as sick. That includes even the people that know about my illness, like my wife. I try very hard to present to her as healthy a husband as humanly possible and that starts with never complaining about being sick. In essence, I hide my illness even from those that know about it.
Edited by PatriotM, 14 November 2013 - 01:55 PM.
Posted 14 November 2013 - 06:27 PM
I totally understand where you're coming from.
I agree that Dianne would totally fit in. She seems like she is one tough cookie and also seems like she has a good handle on things.
One thing I will mention is that, for what it's worth, I believe that the way people think of you depends on how you portray yourself. If you tell people that you have pd and that you think of it as a challenge, not a sickness and that you don't want pity but might need some support along the way, this should totally be acceptable to anyone that is worth keeping around.
In my opinion, if people don't want you around because you are "sick", then you should find new friends.
Again, this is just my opinion and I mean no disrespect and love everyone on this forum.
Posted 14 November 2013 - 07:22 PM
I think the point is discloser of our illness is a very personal thing, and all of us approach it differently. My point in disagreeing with the article is tied to that: for my reasons I chose it would be easier to reveal, I think it is false to state "every man with PD I have interviewed has kept it secret for as long as they can..." there is no oway 100% of male people interview by the writer kept it secret as long as possible, unless he interviewed a grand total of 3 people including MJ Fox.
James, I caution against the press release on Dx Day. People will all respond differently, some will not know how to respond. Patriot & Davon make excelent points. Yes some people care less, some people want to compare their illness to yours (theirs will be minor by comparison but they'll expect returned sympathy), one person even said to me it must be nice to know what is wrong (like the worst case scenario should be a relief)... But it is natural for people to avoid illness, and therefore those who are ill. Some close good friends may not want to talk about your PD, but only cause they really don't want to see you suffer. It is painful to them. I started the circle of friends & family approach at first, the decision to expand that to everyone I know came from two places:
A: I noticed the people I trusted my secret to were able to kept my secret but they wanted to be able to speak freely and that was stressful on them.
B: With all secrets they eventually leak out, I decided to control how people found out and present them with all the facts straight from the horses mouth.
I did not do it for my comfort which is good, cause being public created as much discomfort as comfort. I did not do it for the noble cause of spreading awareness, most people I am close to know what PD is at least to the extent they should.
Posted 14 November 2013 - 07:26 PM
Posted 15 November 2013 - 06:50 PM
To tell or not to tell? If PD is not affecting our lifestyle, our normal routine, our ability to work and socialize, I guess there is no real reason to reveal our diagnosis to anyone else but our family and close friends. On the other hand, when our life becomes an unpredictable combination of lies and excuses, and valuable energy is wasted in concealing our disease, then it's probably a good time to come out. And although the employer should be the last to learn, it's always better to be honest, get out of the PD closet and request all possible adjustments to our work load/working conditions than to be regarded as incompetent, lazy or irresponsible for missing deadlines, showing up late, etc....
What I've learned from my own experience, is that our health condition, as any other private matter, should be shared only with people who truly "deserve" our trust. Bad news is, it's almost impossible to know this beforehand. Some people may surprise us positively, while others-I'm afraid most...- negatively.. I was recently surprised in the most negative way-almost "shocked" to be honest- by the ignorant, insensitive reaction of a colleague to my revelation. My first thought was "you are a doctor for crying out loud. At least YOU should know better than that!".. Unfortunately she didn't.
Good news is, the reactions of other people to our disclosure can help us realize-the hard way...-who is our real friend and who is not.
-English is not my first language !
-Aged 39. Diagnosed at 35.
-Currently on madopar (levodopa and benserazide, 500mg daily) and Azilect (1mg daily).
Posted 21 November 2013 - 08:11 PM
It was kind of hard to conceal for me. Everyone around me noticed the changes before I did!
For years people would ask me about my limp or why my neck was always tilting to the right. Or why I looked so tired and pissed off all the time. Or why I walked so slow.
My symptoms have progressed to the point that everyone notices. I shake. I bump into things. I forget things almost instantly. I always look tired and pissed. Dystonia has my while body leaning right while my left leg drags behind. I drop things constantly. I'm usually wearing whatever I had during my last meal.
I remember a child once at Applebees asked his Mom why "I walked like the zombies on TV.". She turned beet red from embarrassment. I told the kid I had the zombie disease and proceeded to moan and groan with my arms out. All of my friends with me got a kick out of it. Poor kid... Probably thought I really was a zombie.
If anyone asks anymore about a symptom,I tell them about Parkinson's. At least they won't think I'm drunk or a zombie!
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