AS I AM SAT HERE IN FRONT OF MY COMPUTER SCREEN I’M WONDERING
exactly how to write this article.If someone told me I had hepatitis C, would I want anyone to know?And if I did tell someone, how could I make sure they didn’t go and tell someone else.It’s just like sharing a secret.Once you’ve told someone, you have no way of knowing who else is going to find out.In essence, you have to either choose someone that you trust implicitly, or you have to be comfortable in the knowledge (and prepared for the fact) that other people are going to find out.Some of you may be fine with anyone knowing, others of you may feel you have something to lose, are worried about the news reaching certain people or perhaps you’re just a private person.Like most things in life, choosing if and when to disclose is not a decision to be made rashly: it is one of those things that needs some thought and consideration to any possible long-term implications should be made.
Another important thing to bear in mind here is that legally, there are very few people who actually need to know.And if you do not have any forms of medical insurance or insurances tied to your mortgage, then there may not be anyone who really has to know.
But it’s one thing working out who you are obliged to tell and another thing keeping your status to yourself.Can you deal with it?Are there going to be times when you need support, a shoulder to cry on or just to talk with someone who is sympathetic (if not empathetic)?What happens if you become ill?Do you want to hide it and will you be able to if you go on treatment?Are you constantly going to fret that you may be putting others at risk?Any or all of these issues may make you decide to disclose.Then again, you may choose not to, yet further down the line you may change your mind.I would hazard a pretty safe guess (and I’d be willing to put money on it - not that gambling should be encouraged) that there are very few people who go through life living with hepatitis C having not told a soul about it.
If you’ve chosen not to disclose your hepatitis C status, then the rest of this article may not be overly helpful to you, although you may still pick up a few useful bits of information that you can hold on to and possibly use in the future.However, if you are one of the many who decides to disclose, then most definitely read on.
Sometimes it is helpful to think back to who told you, where you were and how they went about it.Not to mention how you took the news, your immediate reactions and how you felt a bit later, along with what questions you had and anything else you needed to know.This kind of information can help you pick and choose an appropriate time and place to tell someone and could enable you to be prepared for how they take the news.It also means you can come forearmed with any information and answers to questions you think the person may have.It’s also worth noting down a few useful websites, booklets etc, so they can look up information and find out more for themselves at a later date if they choose to do so.
Now if you don’t feel that you can break the news yourself, there are other options.Potentially you could speak to your specialist, nurse or GP and see if they would be willing to do it for you.
That way you could take your partner, mother, friend or whomever along with you to your next appointment and the medic can then explain about your diagnosis and what it means.
There really is no right or wrong way to do this and it’s often very difficult to predict how a person will react.
Telling someone is one part of disclosure, but if you go back a step, you may want to consider why you want them to know and what benefit there is to be gained.Is the person someone who may also be at risk of hepatitis C either from you or someone else?Are you very close to this person and do not want to have secrets from them?Or maybe this person could be a good source of support.
Then again, maybe telling a certain person means they will be able to tell others for you, making the disclosure process that much easier.There could be a million reasons and each situation is unique.
People can offer you advice on how to go about the disclosure process, but at the end of the day, you know your friends, family and those around you better than anyone else, so it is you who will best know what the repercussions or benefits may be.And it is you that should ultimately take the decision on who you tell.
Now is probably a good time to remind you that people can live with hepatitis C for decades without experiencing any overtly outward signs of illness.Most of the time people will be unaware that you have the virus, so don’t feel that you need to rush and tell people before it becomes obvious.Having said that, if your liver is not in a good condition (perhaps you have bridging fibrosis or cirrhosis) then some symptoms may come to the fore sooner.Like everybody, you will have good and bad days, but often people live happy and healthy lives for many years.By the same token, if you are on or about to embark upon treatment, this could be another reason to disclose and explain to people what is going on before they draw their own (often very wrong and overly exaggerated) conclusions.
That aside - and going off at a tangent - there may possibly be people at work you wish to tell about your diagnosis.This could be because you just want to make them aware or perhaps you have good friends/colleagues who could be a source of support; after all, we spend much of our lives at work (as if any of us needed reminding!).Legally, there are criteria that define “disability” as laid out under the Disability Discrimination Act 1995: your employer must meet these criteria, but they can only do so if you have made them aware of your condition.The reason I have said condition and not hepatitis C is because you are not obliged to tell them exactly what is wrong.If you choose to disclose to your employer, you can tell them you have hepatitis C or alternatively you can let them know that you have a liver condition.
DISCLOSING TO YOUR EMPLOYER OR LINE MANAGER CAN HAVE ITS BENEFITS.(BY THE WAY, YOUR EMPLOYER AND/OR LINE MANAGER ARE BOUND BY CONFIDENTIALITY AND SHOULD NOT DISCLOSE YOUR CONDITION TO ANY OF YOUR WORK COLLEAGUES. THAT IS SOMETHING ONLY YOU HAVE THE RIGHT TO DO.)
There may be occasions where you need to take time off work, not necessarily through ill health, but perhaps for hospital appointments, tests etc.If you do need time off because you are unwell, you will need to get sick certificates from your GP.This then needs to be passed on to your employer so that you will qualify for sickness benefit.Unemployed people also need sick certificates and in these instances they are sent on to the Job Centre or Department of Work and Pensions.Sick certificates may pass through many hands, several departments and under numerous pairs of inquisitive eyes, so you may want to think about what is written on them.It is worth having a friendly chat with your GP.If you do not mind “hepatitis C” being written on there, then all well and good, but if you do, then perhaps your GP will write liver disease, liver damage, liver condition or a similar type of explanation.Your GP is obliged to tell the truth on your sick certificate, but there are ways and means of phrasing things.If you are going to be off work for some time, then your clinical nurse specialist may be able to write a supporting letter or provide additional information to your employer.You may want to see this letter beforehand and have some input into it, although you will find that clinical nurse specialists are often very experienced and adept at this sort of thing and they will, of course, have your interests and well-being primarily at heart.
If you are only occasionally off work and it is obvious that you are unwell, your employer is probably going to be reasonably understanding.However, if you are off work rather frequently, they may want to look into it.This is where sick certificates and supporting letters from hospital staff can come in handy.Despite supporting documents and legitimate certificates, your employer can still call you into a meeting and raise the issue of absenteeism, citing that your absences are impacting on the business.At this point, you may want to disclose that you have hepatitis C and you can refer them to the Disability Discrimination Act 1995 and explain that the condition is covered under it.If your condition deteriorates, your employer may be entitled to find you alternative work within the company: this should be to make your working life easier and to be sympathetic to your condition, not a way of demoting or segregating you.
However, I don’t want to paint a bad picture of employers because many are very reasonable and they may surprise you should the situation arise.It is just advisable to pre-empt certain situations that may arise by being prepared and knowing your rights.
And so on to the tricky, complex and far from clear-cut issue of insurances.First and foremost, always get advice before taking out or renewing any form of insurance because they often contain many codicils and get out clauses.If you don’t read the small print you could be paying for something that is worthless to you.Getting insurance when you have hepatitis C is not impossible, but it may take a bit of shopping around and potentially you could be hit with higher premiums.Not only that, there may be exclusion criteria that do not cover certain conditions exacerbated by or associated with hepatitis C, e.g. any or all forms of liver disease.The general rule of thumb with insurances appears to be that the more
long-term it is, the harder it is for someone with hepatitis C to get.If the policy was taken out before your diagnosis, you may well be okay, e.g. life assurance and critical illness insurance and you usually do not need to notify them that your circumstances have changed.But I’d check the policy just to be on the safe side!
However, if you have been diagnosed with hepatitis C and then want to get life assurance, you are going to be hard pushed to find companies that will cover you and those that will are likely to charge high premiums and very possibly will put all manner of clauses in.So it’s up to you how you proceed on this front.But whatever you do, don’t lie on the form.It will invalidate your insurance and therefore it will not pay it, nor will you get your money back.Often the application forms involve you signing a waiver entitling insurance companies to check whether you have had a test or diagnosis for serious illnesses over the last five years.The small print may also entitle them to access to your medical records for this period.You may not realise you are signing over the right for them to be able to access this information, so check, check and check again.The insurers are meant to tell you what sort of questions they will be asking your doctor, but your doctor cannot lie in their responses.You could refuse to give the insurance company access to this information, but then they are unlikely to issue you with a policy.On the bright side, there are cases of people who have successfully completed treatment for hepatitis C and a few years after clearing the virus have been given standard insurance rates and conditions.Now if you are going to try and pull a fast one by taking out a policy and then going for a test, in the knowledge that you may well have hepatitis C, stop and think before you do it.The insurers can investigate this scenario and question whether you knowingly had hepatitis C at the time of taking out the policy.They will do their utmost to prove this and any subsequent claims you make may be rejected or at least challenged.
If you have a mortgage, this in itself will not be affected by your diagnosis.What will be affected is any accident, sickness and unemployment cover, or critical illness cover that you may have attached to or in addition to the mortgage.In essence, these are separate insurance policies and once again you need to read the small print and if necessary, call them and ask for a full explanation of what is and isn’t covered.
