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Parkinson's Movement
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Coming out!

I was diagnosed 6 years ago with PD and I have ever since living in shame, fear and anxiety. I have tried my best to hide the disease from friends and family, but of course only partially successful perhaps. I am getting tired of the constant hiding and have decided to “come out”. I am starting a blog.

To my fellow sufferers, how many of you feel or felt the same way?

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I hid the diagnosis during my last year before retirement, in fear of being fired...

Then I told my friends, no shame at all.

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I don't know that I feel shame, but I am a private person. I am 6.5 years since diagnosis and have not told the majority of my friends, neighbors and co-workers. When I do tell someone, it feels like a confession. I've been fortunate in overall managing my symptoms, in large part through reducing stress (meditating, living mindfully, managing my commitments, etc.). But I agree, keeping this secret is stressful. I'd be interested to hear how it goes for you--I too think about coming out, but not sure the best way to do so.

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I tell everybody. If people notice symptoms I would rather have them know what it is than wonder. This has not caused any problems.

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I’m with Park Bear. It isn’t our fault and there is nothing to be embarrassed about. It simply is what it is. I have been honest about the diagnosis from day 1. I am self-employed so my boss (me) is very compassionate with my situation. ;) Other bosses may not feel the same, but that is on them. If they are not accommodating shame on them...likely why there are employment disability laws... All the best to you as you share with others!

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I tell everyone because I have a severe tremor on my right arm. Rather then let them wonder.

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I tell everyone. It makes it so much easier & less stressful. There is nothing to be ashamed of. People actually are inspired by how well I deal with it.

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Likewise. I get positive feedback for doing well.

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I’ve only told a few people but am finding it hard to keep hidden from my kids. Unfortunately I also can’t remember quite who I’ve told! Wish I’d just come out with it at the start.

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I think we all start off in denial. We are human! We cannot stay in denial we have to get off our butts and do something about it. If you really want to do something about your Pd then look at my website - reverseparkinsons.net and contact me. I will help you and it will cost you nothing.

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Which one of the MAO-b Inhibitors do you take? I am thinking of switching to that form of medicine. I was diagnosed with Parkinson's in 2005 and have been on the Carbidopa/Levodopa 25MG-250 MG for years. Thanks for any comments. Mae Leslie

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My husband take Xadago he finds it has extended the life of his Stelevo

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Hi Mae. I was on Selegiline (Eldepryl) but I came off it in 2002. It certainly helped me to come right.

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Thanks for your reply. I've been on Senemet for a number of years.

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I am not popular for telling people that sinemet was not designed to have any affect on the progression of Pd. it was only meant to hide one or two of the symptoms. Therefore, if you did not find any improvement of any symptom after taking the sinemet then there is no reason to take it.

MAOb inhibitors have been shown to help slow down some symptoms so it could be worth trying. The selegiline certainly helped me.

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I hate the Senemet. It has given me nausea, both insomnia and drowsiness, blurred vision and bad shaking, and other bad side effects. I had worse side effects with other medicines my doctor prescribed. It's depressing that there is no (known to me) good treatment for Parkinson's. I'm hoping something is discovered soon that will help without having bad side effects. Thanks for sharing your experience.

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Hi Sleezy.

If you are REALLY keen on doing something about your Pd then start doing the fast walking. It costs nothing, it is very healthy, NOBODY ELSE GETS ANYTHING OUT OF YOU DOING IT! Give it a try, you will never regret it.

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Thanks for the good advice. I will try to walk faster.

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Hi sleezy

It is more than just walking faster. You need to be able to walk properly, which probably means using your conscious brain to control the walking. If you have not already done so, contact me on my website - reverseparkinsons.net and I will send you, free of charge, articles on conscious control of movements and my videos on the walking.

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Thanks. I will contact you on your website soon.

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I wouldn't worry about being popular, Mr. Pepper. Sharing your ideas and story and info, on what helps you, and maybe could help others who suffer debilitating neurological symptoms, is one of the good things about this Parkinson's Movement forum.

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Thanks ddmagee. Even if it only helps a few, it is better than nothing.

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John,

I agree that Sinemet does nothing as far as progression, but disagree that it's purpose is to 'hide' symptoms. I could not function without it. I have exercised since day 1 of diagnosis (almost 7 years ago), fast walking either on the treadmill or outside, but without Sinemet I'd be unable to do that walking. I cannot sustain movement without it. I do find your posts and your story inspirational; I have your book and appreciate the reminders here to keep at it, whether your thoughts and opinion are popular or not. One size does not fit all. This is a great forum to find out what people are doing, what is working and not working for them, as we all find a way to live with this disease and its capricious, insidious nature.

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Thanks for the response. When I say 'Hide' I really meant 'Mask'. You say you cannot do without the sinemet. That means it s doing something for you, which is possibly masking the rigidity. But it does not do it for ever, it is temporary. You have to take more tablets to get it to happen again.

The fast walking hopefully repairs the damaged Glial cells, which then produce more dopamine and then your symptoms get better. The more you walk the more you get better!

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Hi

No shame in having a disease. I told everyone right from the start. I am very thankful it wasn't something like ALS or brain cancer. Life goes on. All the best to you.

Regards Glenn

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There is no reason whatsoever to feel shame. Would you expect shame of someone with cancer or any other physical condition? You did not choose PD, nor did you cause it!

I told people with whom I had regular contact straight away. I wanted their encouragement and support, how could they provide this if they did not know it was needed?

I would prefer people to,know that I have PD than to think I’m drunk most of the time!!

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@malayappan Why shame? You’ve done nothing wrong; certainly nothing to personally bring on such a diagnosis. It’s a disease. Would you look down on a friend or family member who was diagnosed with diabetes, cancer, MS, lupus? No. I’m sure you wouldn’t and neither will your friends look down on you.

Maybe what you meant was ‘embarrassed’ rather than ashamed, in which case I admit to occasionally feeling embarrassed if my shaking is excessive, or maybe if a child calls attention to it. But people generally are very understanding and even solicitous about such a thing. It is what it is. Just get out there and enjoy life as best you can; and don’t let your PD rob you of the joyful companionship of friends & loved ones.

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You are right. Embarrassed is probably a better word.

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Thank you Cjbro2000! I love your encouragement! Sharing this with my father who has PD.

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No need to feel shame, it is natural to not want to tell the world about it to begin with, I found most people kind and sympathetic when I tell them about my problems. So many of my friends have died or are fighting cancer to for me to feel sorry for myself for having PD. Happy Christmas to you all.

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At first I did not say anything to new people I met but soon found it was better to bring it up sooner rather than later. It is difficult to hide a shaky hand and people make up their own scenarios if you don't tell them. It is better to tell people close to you as you need their support.

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If people put you down or try to make you feel inadequate tell very politely to do one

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Hi, why are You ashamed? I have been diagnosed with PD and realer I had it 6 years ago. I find people are very helpful when they see I have a problem, nothing to be ashamed of, in fact, it is very nice that people offered help. When I fly, I go as assisted travel. This service is amazing if you ask for it when you book the tickets.

They collect me from the plane and take me though immigration and costoms and vice versed.

Regards

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Assisted travel is very helpful to me, as well, when I travel.

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I told people right away and was amazed by their compassion and support. yes I am embarrassed when my symptoms are bad in front of other people. But I am proud of the way I’m handling it. Stress just makes your symptoms worse. The truth shall set you free! You’re in good company! Good luck!

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Love this Jebbie12! Will share with my father.

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I am with you Malayappen, I have told very few people and have not told work. I am not ashamed, maybe more embarrassed? Don’t want pity or whispers? But it’s been weighing on me heavily. I often speak publicly and notice my movement isn’t as fluid (dont know what to do with my right arm) and Ive noticed pauses (searching for names) or calling a person the wrong name....(ugg) The conversation scares me not because I fear my boss, but because it makes me sad to see the “first” reaction. I know once its done it will be ok, but the plunge is scary

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I had a hard time telling people too, I felt self conscious at times. If I could go back in time I would have told people sooner, eventually it became the elephant in the room and that was even worse. Trying to seem “normal” when I was feeling symptomatic was just added stress that I was putting myself through. I have found though some people although kind do treat me a little differently and I think that was part of the fear of telling, I just wanted everything to stay the same.

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One should never feel ashamed because they have been diagnosed with PD. It's not the person's fault. I was having some very noticeable symptoms, that were interfering with my daily life, for a few years, and people noticed, and I couldn't give them an answer,before I was diagnosed. Since being diagnosed, and put on Sinemet, with dosage adjusted, most of the noticeable, awkward symptoms, are now not very noticeable, and, for the most part, I act and look like a normal person, most of the time. So, in the beginning, right after I was diagnosed, I told people who were concerned about my shaking and impaired walking, what my diagnosis was. Now, a few years later, I don't talk about it anymore, because most of the time, I, outwardly, look like I'm doing ok. I do have some not to noticeable symptoms, but, hey, why complain, nobody wants to hear it anyway!

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I was diagnosed 9 years ago.

Reminded of my mortality.

Counselor asked me "Have you figured out why God gave you the gift of PD?". Once I accepted it as a gift and not a curse, my smile returned.

Hang in there. Your glass is half full, not half empty.

Challenges are blessings, growth opportunities.

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I try to think this way too ... to remember challenges are growth opportunities. :) I forget sometimes why I'm here but when I remember it's to grow, i shift from feeling like a victim and I feel empowered. Always appreciate these reminders! TY

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Although I would rather not have it, there are some gifts that have come with this diagnosis. I’ve met some wonderful people I would not otherwise have met and I’ve realized strength I never knew I had. You also gain a greater appreciation for very basic things that others take granted and that is a gift.

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I’m 11 years in, and it’s just starting to become common knowledge. I think it was more difficult for me to tell people, because when I tried, they would always respond in such a shocking manner. At the time, I had 3 kids under the age of 5, and was 34 years old.

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I agree with Livinmylife that it is not an issue of shame, but anxiety about the reaction of others. All my French friends and associates know, as do my family and personal English friends, and all have been supportive. (actually, and I am not typically a softie, I have been quite touched by the concern and warmth of many). Personally, I preferred it that my best friend said "well at least Sue can throw you in the bath tub with the washing" rather than pitied me. Most rally round to tell me how many people manage marvelously and how much can be done these days - even if maybe that is more hope than knowledge based.

But I have avoided mentioning it on Facebook, where a number of clients are friends. I doubt my business would be affected, but its a risk I can do without.

And its worth remembering there are other troubles in the world than PD. My wife is suffering increasingly with rheumatoid arthritis. I told very good friends Joe & Anne, and Anne said she had just been diagnosed with Type 2 diabetes, and we all have to manage and she was sure I would. She was one of the first in the UK to know. I confess I felt she was a bit dismissive of my condition, until I remembered that, 11 years older than me, at my age she had a serious motorbike accident, damaged the back of her skull, was in a coma for 7 weeks, slurs her speech, walks (and disco dances) with a cane, and can't climb stairs. And Joe broke an arm and both legs in the same accident, and when I took him out to the pub for the first time from hospital, the only snack they had were pistachios, and I had to shell them for him. Then, a few years ago, due to reduced mobility in his arms he fell off a push bike in Spain and fractured his C1 and C2 vertebrae (and is stunningly lucky to still be alive). Count your blessings. A bit of positive thinking goes a long way.

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To understand where you are coming from I would first want to know how old you are. If you are past 60, you probably have had it for years and, even without meds, it may be a very slow progressing case. And even if you are younger, if others have not noticed in six years, it is probably very slow progressing.

My diagnosis with Parkinson's Disease in September 2013 at age 70 gave my life a new focus and challenge. Finding ways to meet this challenge helped make the last several years some of the best years of my life. Perhaps I am just one of the more fortunate PD’ers. I am only stage 1.5 and, more significantly, I have remained there for over four years. I am 75... I still work... I walk everywhere. A couple years ago, I ocean kayaked in the Sea of Cortez... something I would not have done at age 72 before I was diagnosed.

But even at 75, I have been selective in whom I have told. Close friends and close family i have told. Others I work with I'd rather not tell. It isn't shame! It is I don't want people babying me, watching my every step or, heaven forbid, feeling sorry for me. And if you are taking the right meds, exercising so you are in otherwise good physical shape and your symptoms aren't obvious, then those who don't know don't need to know; and those who do will be proud of you if not amazed.... and you be proud of yourself for how you have faced up to it.

Just my opinion.

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4000Nights

Your story just amazed me. I look at PD as a challenge that opened my eye to the real world. Believe or not, emotionally,I feel much better than before I was diagnosed, more stable , more realistic. I appreciate the Mother Nature for offering me such a wonderful opportunity.

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Thanks for your encouragement. I am 54 now, diagnosed at 48.

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4000Nights, I am also touched by your post. So inspiring. Thank you for sharing.

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I was diagnosed 20 months ago. I feel no shame as it is something I didn't ask for. I just got it. I tell everybody ( even strangers I meet ) , I think the tremor kind of gives it away. And it is better that they know I have PD than think that I have the DTs from too much drink. Also I am grateful that I have PD and not Cancer, MS, motor Neurone or Dementia. This is the first illness I have ever had (I'm 69 next month) and I mean never had flu,colds , headaches etc. I've had injuries ,i.e. crushed under a car,motorcycle crashes and football (soccer) injuries but never been ill. So my diagnosis came as a bit of a shock but I think I am fairly OK with the fact that I have an illness that WILL kill me in the end ,but so will old age............

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Thanks, everyone, that is a lot of helpful insight.

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I'm self employed, so that wasn't an issue other than telling employees. I took them in small groups and said "well, we finally know why nobody can hear me". People asked questions and I answered as well as I could. I posted to my FB page shortly after being diagnosed and the response was fine. Do it.

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I don't have a problem telling people and as i tell my son when we're out its ok they think I'm drunk not sick. Which I think is funny.... I must be losing it LOL

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Malayappan,

Your name suggests you might come from or live in Malaysia. Do you? I was just wondering how Malaysians would look on PD.

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Hi, Hikoi, I am from South India. I live in the USA. But, I have heard that it is a huge stigma in India. I have been able to hide my condition from other people there. I don’t know what the future holds.

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Before medicine controlled my visible symptoms fairly well, sometimes I didn't have a choice, but to tell people.

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malayappan I think that you should have "come out" six years ago. How can your friends , co-workers, Boss, family and neighbours trust you when you hide something like that from them. You need to work on your self esteem because you are going to need it.

Stand and be proud that you will fight this with every bit of your ability and to hell with anyone who does not agree.....

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Thanks for the encouragement.

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