Hello all,
I have recently had some conversations with people around telling new people in your life about your diagnosis - and how and when to do this, and if its worth doing at all sometimes?
What have your experiences been, is it something you share early into a new friendship or relationship perhaps? Or do you wait and see how it develops?
Hi Dawn, I do not think there is a right or wrong answer to your question, I think it depends on your prognosis stage, the circumstances and type of relationship. I am married so I did not have the million dollar question of when to say to a prospective future partner and of course if there are immediate courses of ongoing treatment, side effects, fertility issues and fatigue involved it gets a real problem. I personally told close family immediately and I think they would have sensed something was wrong and personally I believe people’s imaginations and fears are worse than knowing the truth. I was lucky my son was 30 yrs old and lived locally. What I do regret is that I told him on the phone and not in person. With younger children personally I believe they sense something is different or wrong from a very young age and I believe they should be told in terms appropriate to their age and that it an open subject that the family can talk about and they are encouraged to ask questions and say how they feel. As for work I think if it important that they know if it impinges on your ability to continue working. I am so glad Bloodwise has a factsheet on their website now that can be downloaded and be given to employers as I could not explain something I could not understand myself. Also people’s perception tends to be that you get a condition, then you have treatment and everything goes back to ‘normal’. This is certainly often not true with blood cancers. In my case I have not had treatment so I have had to learn to manage my symptoms, mainly fatigue, and I wish I could have explained what was going on for me and any adjustments to my work pattern which would have meant I could have continued to work effectively. As for new friends I think it depends on the circumstances and a need to know basis. I now think 15 years down the line that it is rather nice to actually know people with whom I am just ‘Me’ and not ’ Me with leukaemia’. If you are a fundraiser perhaps you need more people to know !!
As I have spoken to groups of people and individuals due to my anbassador position I probably am a bit more free in discussing my HL diagnosis and after effects (some which are more noticeable after spending 5mins in my presence). The funniest occasion was when viewing an exhibition by Hodgkins in Wakefield. A woman made a comment as she passed me about HL (she was as unimpressed by the paintings as we were). I stopped her, and asked what she knew about HL and enlightened her, giving her a Bloodwise leaflet so that she could find out more!
When I was first diagnosed over a year ago I told anyone who asked about my diagnosis, none of those people have hung around, the best I get is the neighbors asking my husband how I am, never me directly. So now I say nothing unless it’s unavoidable, realistically they can’t help me and it just stops people behaving normally towards me, which is the one thing I crave. Even at my haematology clinic I have to hide the fact I am terminal and wear the mask as I represent their worst fears. So my opinion is before telling someone about your condition ask yourself what will you gain from it and what will you loose. Every persons reaction will be unique to them and a reflection on their own hang ups about cancer. Even amongst other blood cancer patients I have not found universal support, my troubles are too much of a burden for any other individual to take on board so now apart from on this forum I keep stumm.
Best wishes alfie.
Alfie thank you for sharing your thoughts, I am very sorry to hear what you’ve been through and that you feel too much of a burden. We as a community are so pleased you’re here, and I am so glad you can share your thoughts and worries here.
Hi, Alfie, perhaps you have just demonstrated the value of our community forum, we are the ones that really understand each others fears, thoughts and feelings. although it sounds an isolated existence for you. Sometimes people in the outside world just do not know how to be with us. My social circle has definitely changed since diagnosis and the friends I have now, truly are my friends. It must be so annoying when people avoid you and ask your husband how you are. For me that ranks alongside people saying ‘you are looking well’. You are all my buddies on this site.