HD Australia

To all our friends who have & for all the people that watch but dont know how,  I would like to know everyones experiences on how you all "come out" and told your friends/family. Linda & myself have been discussing the idea, but we are not sure so we thaught we would ask everyone here how they did it, as it has been about 18 months since we found out about Lin. but we haven't told anyone and I believe this is becoming an unhealthy way of dealing with her HD. I would really like anyones input, whether it be good or otherwise, so we could prepare ourselves for what lies ahead.

To Tanya, thank you for contacting Lin, as she has found a great confidence in knowing that she is not alone.

To everyone else, we are not on our own - we just havent found each other yet.

Look forward to everyones feedback - I know what I am asking is very personal, but I am at the stage where I need the
support to understand where I need to take the next step.

Thanks to everyone

Macca ie itzme

Hey Macca - first of all, I tested gene negative, so 'coming out' was easier for me (I suspect) but telling family and friends about Dad and my siblings, and 'explaining' their often difficult behavour is still challenging. I did 'come out' with my boss and my closest friends before and during testing, but the most difficult people (my kids, in-laws & my work colleagues) I put off until after my testing was complete.

We found 'coming out' very different for each and every person, depending on the relationship we had with them and even where they were mentally, if they could handle the truth or not so to speak. I would definately not 'come out' fully in one go - but trickle feed, starting with those you trust will understand, stand by you no matter what and not 'spread the word' on your behalf. HD certainly lets you know who your real friends are!

And I think it depends on where you are on the HD journey yourself - symptomatic or not, at risk of being terminated or demoted and whether or not you need more private time to come to terms with things, and if the people you need to reveal it to are 'at risk' themselves or at a vulnerable stage of their life - major crossroads in their lives, mentally unstable, new to parenthood, exams etc.

We let people know on a needs to know basis - those most affected first, and gradually including others as we felt it necessary or right! We sat some down and spoke openly and honestly round the table (especially my boss whom I asked to be my moral compass during the testing process and put me on leave if he thought I needed it at any point in time - I didn't feel I could judge my effectiveness at work with an objective mind with everything else going on!) Most we started the conversation with Dad's behaviour and diagnosis and depending on their reaction, revealed the hereditory nature of the illness and finally my at-risk status. Others we wrote letters to - long and detailed for some, brief paragraph in the 'Christmas newsletter' for others. There are still people who don't know, 4 years on - especially those that know my siblings, as they are not all out of the closet yet and we don't want to put them in an awkward position of having to explain things when they are not ready. Like I said before, I tested negative so it is easier for me, but siblings were not so fortunate

Coming out is certainly not easy, and peoples first reactions do not always reflect how they really feel - some just need time to digest the information or find out. It does get easier over time- most people understand, most relationships grow stronger as you 'trust' them with such personal information and they often open up about their own private battles. But ALL relationships change - some grow stronger, some more distant, some seem closer to start with but drift apart over time. Some want to talk HD all the time, others prefer not to ever mention it again. Some use it as a starting place to clear the air over past issues, others dredge up the past assuming HD was the root of all problems.

It helps if you are at peace with HD yourself so you can explain it in a positive framework and not get too upset while telling them. The way you reveal it, really does teach them how to react. If you are teary and unable to cope or talk about it, you teach them that HD is something to dread, fear, curl up in a ball and hide, then you will be seen as helpless in the fight against the disease, powerless, passive victims, that may as well lie down and die now. If you tell them in a positive framework - that you know what you are dealing with and have plans to minimise its affects, through supplements, drug trials and real hope of effective treatments in the near future, that you will make the most of today by travelling etc, then they will see it as positive reflection on life and that it is a life worth living and fighting for. We really do teach people how to treat us! Good luck in your journey Macca, and let us know how you go from time to time.
Shy

Hi Macca,

We found a similar situation to Sky. We both work for small companies so we could talk openly with out boss's during the testing so it made it easier to tell of my husbands positive and my negative results though I would see this as a tough point to bring up if you worked for a large company but I would work on a need to know basis for work.

As for family and friends start close and go in with an open mind as to who will accept it well and not well. You cannot predict at all how people will take the news. We found it useful to have a website for people to refer to so once they knew they could take their own time to read about it and then ask questions. We also have found a great booklet through the HD association and have photocopied it and given it to family and really close friends as it explains things really well and it is a easy read.

Many of our friends have just so many questions and want to know how to help so be prepared with answers as to what you want people to do. We simply want people to call and ask how are we and be able to talk if we need while other people may want or need more. We have found that it stirs up a lot of emotion so be prepared to face ups and downs over and over. We also asked 2 of our closest friends to talk with other friends just so we didn't have to tell the story over and over. We were specific as to who we wanted them to tell though at the same time we have told everyone it is no secret and if it comes up please inform people with correct information. We welcome people asking questions and are very open with it and our emotions and have had people cry with us and also for us. We have even had friends cry when we have told them though we have not been crying.

EVERY person reacts differently and from day to day that also changes. I do urge you to open up even to a few close people it will help. We have found the more we talk about it the easier it is to deal with at times. It is NEVER easy but it is your life and you can share the load.

Good luck,
Daisy.

Hi Macca - I agree with Shy and Daisy.

I told close family first - same as Shy and Daisy - I either directed them to a website or gave them printed material that they could peruse at their leisure in as little or as much detail as they wanted in private.

I also agree that it's best to limit it to people on a "need to know" basis - otherwise you could be compromising the privacy of other family members who have or haven't tested, or who may be "at risk" and don't want other people to know. I don't know if your wife is in this category with siblings/children/ cousins etc.

Hope this feedback from forum members helps you decide which path to take. Just remember - everyone's different and their reactions could all be different - you just have to learn to roll with the punches.

Good luck - let us know if you need further feedback or have other questions, and if you want to share the next step in your journey with HD on the forum.
sonnie

And another thing...
Some people expect symptoms to be evident immediately, and they watch your every move! This can seem rather daunting if you are already feeling vulnerable and self conscious. Bosses will keep a closer eye on you - which can be good if they are supportive, reduce your workload or stress levels if they see the need, or it can be quite intimidating depending on your circumstances!

And some people who do a little research, also do the math and expect that within 3-5 years you'll be in a hospice or high dependency ward of some kind! Most of the literature available is outdated and still states 10-15 years life expectancy once symptomatic - they figure they have 10-15 years at best, but that you've been grouchy, clumsy or 'been odd' for X years, therefore you must only have Y years left! What isn't clear is that we see the 'soft' symptoms (moodiness, personality changes, withdrawal, even job competency etc) many years before it is considered 'clinically symptomatic'. By definition 'clinically symptomatic' is observable beyond all doubt by doctors, with brain scan or multiple physical tests to back up their claim. By the time you are clinically symptomatic, up to 90% of the inner cortex of the brain is already dead or dying. In reality, after onset of 'soft symptoms' life expectancy is more like 30-40 years (I know this is different depending on CAG count etc, but much more reassuring!) Giving people a broshure or the name of a good website (like HOPES) will give them the chance to look up current thinking on HD without freaking them out! It's scary enough without adding this outdated thinking to the mix!

It really is difficult for people to grasp the gradual aspect of this disease. Even for me, it seemed those family members with HD deteriorated so rapidly, almost freefall in the year following their diagnosis, and it really freaked me out. It wasn't them deteriorating at all, but that I was aware of the symptoms now and what to look for, not excusing behavour, agression and clumsiness with other excuses or reasons.

So when you do tell others about HD, give them some 'hopeful' literature to digest later in their own time, accept some people will be falling over themselves with offers of help and support (as though you have a short life expectancy) and stress that HD is not the hopeless disease it once was - there are effective treatments now for many of the symptoms and the majority of scientists agree that within 10 years there will be treatments to stop, slow or even reverse the effects of HD. I know people have been holding out for a cure since the gene test was discovered back in 1993, but this is not pie in the sky wishful thinking, but the key researchers and drug companies honest forecast. 10 years isn't that long in comparison to the duration of HD. Be hopeful - I am and good luck!

Hi Macca and Linda,

It's been great talking with you!

I've been doing a lot of this in the last two months since I got my positive gene test result, with mixed success. I haven't told everyone in my life, just the people I feel like a) I can trust and b) I might want to rely on for support. I wish I could say this has gone without a hitch in every occasion, but like most big things this really is something that sorts out your true friends from the others. I told my Boss and his wife, I've been working for them for ten years now so they are really almost more like family at this point anyway, and they have been very supportive and understanding with taking time off for testing and other appointments over the last year. I've also told the majority of my family and my partner, Sarah's family and a few close friends. Most of my conversations with telling people have been quite straight to the point, and I've explained as much as I know with regards to HD and given them an opportunity to ask questions if they want to.

I've found the results pretty mixed. The worst ones are the ones that go quiet and apologise, as though I'm on death's door, which is certainly not the case!

To be honest it's been a pretty exhausting few months, having the same conversation many times over, but it's definitely helped me accept my positive diagnosis and I think it's done me good to talk about it. I suspect this is a very personal thing though, much like the decision to get tested in the first place, and you should certainly not tell anyone you don't feel comfortable telling, or before you are comfortable telling people.

Cheers,

Tania

Its Linda and Macca here,

Thank you everyone for your feed back,

It is really appreciated and informtive.

I didn't know who to talk to because our famiily are in other States and we were feeling quite alone.

Thank you Tania for your friendship and understanding.




Love

Linda








I really needed that !!!