Neil Boal is an HFV member and former HFV President
This article is the text of a presentation Neil Boal gave at the WFH World Congress in May 2014. It is reprinted with permission from Missing Factor, the magazine of Haemophilia Foundation Victoria (www.hfv.org.au), August 2014.
There seems to be many reasons why not to disclose to people about your bleeding disorder. I say “reasons” and not “excuses” because whatever thoughts are concerning you about disclosure are usually very valid. I will focus on career and relationship disclosure as they seem to be the two main areas of concern.
As a child and young adult the choice to disclose was not usually mine as my parents thought whoever or whatever I was involved in had to be informed in case of any accidents occurring. This of course was things like school and organised sporting activities.
Now, looking back, I can totally understand why, but at the time being “exposed” did have some negative impact. This started in secondary school in the form of verbal bullying mainly because I wasn’t allowed to take part in many of the sporting activities.
My haemophilia was not obvious and most students and even some teachers thought I was faking. The irony there is that I went to that particular school because another boy with haemophilia was already there. However, he was much more severe and had braces on both of his legs, so that’s what they thought I should have been like. However I didn’t take too long to fit in by using my many charms and good looks to good effect. But there still remained a few who doubted me.
As I moved into adult hood the decisions around disclosure rested with me. My very first job interview loomed so I had to decide whether to disclose or not. I had both ankles and my right elbow as target joints and these were very unpredictable, so there was no doubt I would have a bleed at some point during my career.
My decision was to go in with an “honesty is best” policy. I explained to my boss the ins and outs of my haemophilia, along with the treatment, but also not forgetting to add in my good qualities as well. I did get the job and I was told my honesty had actually made the difference.
As I’ve changed jobs over the years being open about haemophilia has never been an issue. Having said that I went to work on many occasions with some very painful bleeds and that served the purpose of showing that if I did take a day off then it meant I was really sore and genuinely couldn’t make it to work.
However I did change my honesty policy when I was diagnosed with HIV and Hep C. Back then there was so much hysteria surrounding these viruses that there would be next to no hope of holding or even getting work at all.
This was about the time my wife and I moved interstate and we knew no one. We decided not to disclose anything about the haemophilia and I managed to get through five years without anyone being the wiser. I had an elbow frozen at about 90 degrees which was hard to disguise but I explained it off as an accident I had as a child and everyone was happy with that.
When my wife and I moved back to our home town then I was back to having to disclose my haemophilia. Though I was employed by people that didn’t know me, the chances of them finding out from someone who did were quite high.
Again being honest about haemophilia wasn’t a problem but now the concern was my health was deteriorating because of the blood- borne viruses. Over the course of a few years I had to negotiate reducing working hours, but I blamed my haemophilia (which was partly true).
Luckily I had good employers who valued me and were happy to keep me on. I think if anyone is good enough at what they do then I think a lot of employers would do the same. As I got older my joints began to decline rapidly and it was a combination of health problems that forced me into retirement in my mid-forties.
Moving onto relationship disclosure; now, I can’t spend too much time on this as my girlfriends at school all knew about my haemophilia and my wife knew through our common circle of friends, and we were already a couple when we found out about the HIV and Hep C.
However, I have seen the effects of people in relationships that have hidden things and this can be disastrous when the relationship gets serious. Nobody like secrets and the fact is the longer you hide a secret, the more difficult it is to talk about and the harder it is to hide. Similarly if you spin a web of lies, you have to remember them and often create more and you can end up in a hell of a deep hole that you may never get out of. It also creates a level of distrust that may be hard to dispel.
So what advice can I offer on disclosing your haemophilia or blood borne virus?
First you must identify the situation and how important it is to you.
Is it for career or personal reasons?
Either way it’s a personal decision that, once out there, can potentially, have a significant impact on your life.
As dramatic as that sounds, preparing for possible outcomes can lessen any negative effects that may come your way.
So let’s explore the scenarios mentioned above.
Career: Firstly you have to identify if you legally have to disclose your disorder. If you’ve chosen to pursue a career with a health element to it like the Armed Forces or Police Force then you should arm yourself with all the available up-to-date information on haemophilia plus a personalised letter from your specialist supporting your argument that you believe you can do that profession. You may even need to get some legal advice.
In other normal low risk careers then it’s up to you if you wish to disclose. You know your body and whether you could competently carry out your duties. If you do choose to disclose then give your potential employer some confidence in how well your condition is managed and it should rarely, if ever, inhibit your duties but you just wanted to inform them to be honest with them.
If you decide not to disclose then that’s ok too, but you really need to be super diligent with your care to minimise time off. Often these day’s businesses have team building exercises that may prove a problem for you if it’s really physical, so be aware, you may need to treat beforehand.
Relationships are a different ball game. I believe you have to be honest. That doesn’t mean to go and blurt out everything on the first date, but if you think things could get serious then fess up sooner rather than later. Reassure your partner that haemophilia is just a small part of you and then give them as much information as they ask for, but don’t over load them.
At some stage you may want to take them along to see your specialist or social worker.
Your partner may even want to have a private meeting too so they can ask questions they might not want to ask you. I think you should support this as this shows you have nothing to hide. You would have to give your doctor or social worker permission though as they have your confidentiality to uphold.
Your Haemophilia Centre or Foundation can be a great help too by providing information booklets on many different topics and are terrific at offering avenues for peer support which can be the most useful of all tools.
To finish, I have found being open and honest about haemophilia and my BBVs has been very positive for me. It’s actually opened doors for me and created some opportunities I would never have got otherwise. I’ve met some great people along the way all the while creating awareness, often inadvertently.
If you view your disorder with a positive attitude then people tend to be positive towards you.
For more information on disclosing hepatitis C if you have a bleeding disorder, see the My choice to tell fact sheets on the HFA web site .
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