I recently started online dating and would like the community's opinion on when to come out of the PD closet.
I was diagnosed 5 years ago at the age of 49. I'm active. I run 3-4 miles a couple times a week and bike for 30+ minutes most days. I work fulltime and only a handful of coworkers know I have PD. I do well in social settings and most people can't tell. My right hand (dominant) dexterity is affected and I get stiff and slow when my CL wears off. Tremor is mild and occasional.
So, back to the question. When is the right time to acknowledge my PD and why?
(in the profile, after we match, in person, etc)
I don't want women to think PD defines me, but I don't to waste their time if it's a deal breaker.
Thanks!
Written by
al315
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I cast my 1 vote that you put it in your bio, i.e., up front, because, after all it is their decision whether or not they want to date a pwp and all you accomplish by withholding that is to irritate some. Yes, it will cut down the number of replies you get, but those that do reply are OK with it, so telling people up front ultimately serves your interest.
Thanks. I'm leaning towards disclosing after the match. I typed up this boilerplate response.
I want to be transparent with you before we go further.
I was diagnosed with Young Onset Parkinson's Disease in 2018. Basically, my body doesn't produce enough dopamine and I need to supplement it with medication (similar to a diabetic and insulin). The neurologist told me that with proper medication, diet and exercise that I can live a normal life for decades.
For comparison, my symptoms are closer to Ed Bagley, Jr. than Michael J Fox. I'm very active. I run 3-4 miles a couple times a week, bike for 30+ minutes most days, scuba dive, bowl, hike and walk my dogs. Exercise is a proven strategy to slow down the progression of the disease.
Most people can't tell I have Parkinson's Disease. I work fulltime and only a handful of coworkers know. I do well in social settings. My right hand (dominant) dexterity is affected and I get stiff and slow when my medication wears off. Tremors are mild and rare.
I won't judge if you don't want to continue, but I hope you do.
I think what you’ve written is perfect. I, too, entered the dating world after my Parkinson’s diagnosis in 2017. Honestly, the 3 people I dated were not phased by my diagnosis and I’m now engaged to a man I reconnected with after knowing him when we were 12!! The first person I dated phrased it as “none of us know what’s coming down the road. You just happen to know yours.” Sadly, after we amicably decided to just be friends, he was diagnosed with an aggressive lymphoma and passed away a short time later. None of us is promised tomorrow.
You're right about no guaranteed tomorrow. My wife was diagnosed with Stage IV colon cancer in 2021 and passed away in 2022 at the age of 49. PD seems like small potatoes in comparison.
The reality is that it is a very slow neurodegenerative, progressive condition. However, no one knows how it is all going to turn out in the long run.
You want a relationship that will be rock solid and can weather the storm that is Parkinson's and you will need all of your fortitude and your strength to weather the storm. Like it or not, your closest loved ones will be part of your journey.
Point is that it better to be upfront and not paint too rosy a picture, even if in your heart of heart, you are always optimistic.
In my opinion I think it's ok to tell them on first meeting. I've never dated on line but I'd imagine everyone has glossy photos with airbrushed warts; profiles wìth no faults. So why disadvantage yourself. When you meet face to face though and you tell, I'd be tempted to keep it brief and only talk about it for as much time as they're interested.
The danger of saying nothing on first meeting is that it becomes harder to tell them. Then it becomes unfair on them.
I've dated off and on for most of the six years since my diagnosis. Like the OP, my symptoms are barely noticeable at this time. I chose not to post anything about my PD on my dating profile, but I do make it a point to bring it up on the first date. I do think it's important to address it early to be fair to the other person. For some it won't be an issue but for others it will be, which is completely understandable. For me, dating after my PD diagnosis has been a positive experience. I've met some really wonderful people and had many good times. Although I should mention I'm only looking for casual dating and not interested in marriage, so I'm not certain if my results would be different if I were.
Maybe I'm bad person, but I would never go to a date with PWP. Finding that out on the first date would be horrible. Imagine you need to tell someone that you dont want next date because of his/her condition. My advice - be honnest and don't get people in that position.
@ sunflower_79. I understand your frustration with the judgemental a attitudes of many people who treat Parkinson's patients with little sympathy or respect or compassion.
But you need to recognize the vagaries of human nature and the human condition. Not everyone feels the same way. If this were true, you would not have instances of romance in the most unlikely circumstances such as people falling in love with prison inmates, quadriplegics and amputees and even marrying them. Just Google and check out the stories.
Parkinson's patients actually make great companions simply by virtue of the unique life lessons and lived experiences that transform us into better, more compassionate and understanding human beings.
Please don't understand me wrong. I just think that is unfair dating with someone, show your best, let that person fall in love, than tell him/her about condition.That's not mean I would leave my husband if he get some bad disease..nobody know what would happen in our lifes, but if I can choose I will date with healthy people.
Seems like a huge dilemma. Honesty above all! Perhaps it would be easiest to first look within the YOPD community. It saves a lot of explanation. Maybe the dates are already pouring in through your chatbox…. 😉
I’m the spouse of a pwp. I would not put that on your bio. After all everyone who is that age probably has young onset some kind of condition that hasn’t been diagnosed and you could unnecessarily scare off someone who would be a great match and who would accept it once they knew you and judged for themselves how disabling it is.
Meet people, go out on a couple of dates and if someone seems compatible tell them on your 2nd or third date. Most online dating ends with a run of unsuitable people who you aren’t interested in anyway. No need to tell them all!
On date 2 or mention taking your meds and explain they are to boost dopamine as you don’t naturally produce enough . Date 3 mention the low dopamine is due to Parkinson’s.
(I assume you are at an age you aren’t dating anyone who is wanting to have a baby? In that case it could concern them that it might be hereditary or that you might not be around long enough to be a Dad to them).
You're looking for a first enjoyable date. So have that and if you feel an attraction and think it could go further then you really should say. Remember people do not reveal everything prior to having a first date. Good luck.
I am sooooo glad you posted this here. I've been believing that my dating life is basically over now. And reading your post gave me some sliver of hope. I need to address this belief I have. But I don't think getting a PD diagnosis bodes well for anyone's positive outlook. I already told one person on our first date, and obviously he was not the one since I never heard from him again. I was already pretty much out of the dating scene for a while since I'm 58 now. But I also believe that loneliness is a killer of all of us. COVID made everyone feel isolated to some extent. And I am certain it caused my PD. Anyhow, I am inspired by your post, and personally, would wish to be very up front about my situation. I can't really hide my tremor anymore, and even thinking about hiding anything makes the tremor worse, which is also physically painful. So yeah, I think I would put it in my profile. And knowing me, I would get zero responses ... eeeyore day today.
I always have put it in my profile and got plenty of folks who didn't care. I even double checked with folks before we met. Many people even shared that they had chronic health issues they were afraid to put in their profiles. I'm 51 and now live with my 45 year old boyfriend who I met online a couple years ago. As a woman online we definitely have advantages as there is about a 1 woman to 10 man imbalance. I'm pretty good now 9 years in but my voice got effected by brain surgery so it's noticeable .
Losing my tone and having a soft voice are 100% better then the severe dystonia and convulsive tremors I had before surgery. I was housebound, in severe pain, wasting away and now I can work, walk, drive and live again!
HiI feel the same way! The few friends that know treat me as if I'm contagious and don't understand why I don't tell everyone...I prefer to limit who I tell so I am just "me" As far as dating I am afraid but that could change
U on the other hand sound very vital ...I don't think U should tell someone until a relationship seems to develop
I'm the partner of a pwp and we are facing some of the difficulties that can occur later with PD. I would never abandon him, but not everyone finds these things bearable. I think your initial idea of telling those who are a match is the best way to handle it. And if you find someone you'd like to know better, encourage her to do some research on PD so she knows what might possibly occur in the future. I'm sure you wouldn't want to invest yourself emotionally in someone who might run for the hills if the going gets tough.
I did not know there was a PD closet and I am not sure why there would be one. I think it should be in your Bio. Some people do not easily turn into or make good friends or wives or care givers and you really need to be sure you identify them but that is a normal part of the dating dance anyway. Are their any more closets?
Everybody's PD journey is unique and personal. I was diagnosed at 49. Believe it or not, some people are judgmental, biased and misinformed. It's been over 5 years and I am still working fulltime and very active. I really don't want to advertise that I have PD to the world. I will tell people on my terms. Thanks.
it's true. It's hard for some people to accept PD and I think that might be because they are afraid that anyone could get it anytime. It's a reminder somehow that any moment could bring unwelcome news to ANY of us.
I agree with waiting, just a little. If someone just watched the MJF movie they most likely wouldn’t respond, and I understand. I have been dating for about 3 years and found PD 1.8 years ago. I just told a woman on the 3rd date and she was perfectly fine with it. It’s not like people who are jerks put it on their profile. You date and learn about one another and decide if you want to move on together or not.
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