I have been with my man for 3 years. I told him about me having CML because I was diagnosed 4 years before that. I told him that I do not want to be treated as a handicap. He is very supportive in accompanying me to my appointments and making sure that I take my Spyracel every night. However, I feel like when I want to speak to him about how I feel or what is going on with me internally, he seem so distant or not interested. I understand that he may not know what may be the right things to say but at least show me that you are listening and that you care. I, in-turn, will call my closest friends or my sister and talk about the my feelings and then he feel like he is the last to know. I feel like I am in a damn if I do, damn if I don't situation. I love him dearly but I do not know what to do. I need some support in how to cope with this situation.
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What should I do?
Hi hope your well. I have experienced this but with my sister not my partner. I put it down to denial lol when ever I have tried to talk to my sister she changes the subject quick she won't entertain conversations about my future such as my will etc she is brilliant in helping me when I'm tired or feel unwell but she can't cope with feelings around the cml. I think it's because she can't cope with her own feelings about it as it scares her. We have agreed that we won't talk about the feelings and that I will talk to my friend instead
Prob not much help sorry
Ni x
Do you have a Macmillian Nurse allocated to you? If you do he or she would be the person to speak to. It is important for you and your partner to be able tackle life with CML together. The nurse will offer you suggestions and may offer to have a chat with your partner to talk through his concerns.
Kind Regards
Lydia
The only expertise I can offer is as a man, and as you point out yourself, he may just not know what to say and (speaking as a guy) men can get very uncomfortable in those kinds of emotional situations and be somewhat withdrawn. It's not the right thing to do, but we're not all blessed with the skills in empathy and sensitivity that women seem to have naturally and women can get very frustrated with our lack of a skill so basic to themselves.
One thing that I can think of is that you could tell him that you understand how hard it is for him when you talk about it, that nobody comes into these places in life with a training manual for what to do, and ask him if he'd be prepared to go to some kind of supporters or carers meetings to help him learn how to deal with the situations because that would help you when you need to talk and are feeling low.
For my part, I do understand where you're coming from - in the 12 months since my diagnosis, my older (non-resident) adult children find it very difficult to even ask about the CML, the subject is mainly simply avoided by them, and I think that in the last year they've asked specifically about CML perhaps twice each. To spare them their feelings, I never bring it up either. They don't know my PCRs, little about my side-effects or other progress other than that I'm not dying. I sometimes talk to a couple of good friends, but I've come to the conclusion that I'm pretty much on my own with it (I'm single). Perversely, for most of the time, that helps because you have to just put it out of your mind and get on with life as there's nobody to talk to anyway!
I hope that rambling helps.
Rod
The only thing I can add to all the comments so far is that a diagnosis of CML (or any life-threatening disease) does not only affect the person diagnosed- but rather everyone that is involved in that persons life. From what you say, you boyfriend is certainly behaving as though he cares about you- he makes sure you take your therapy and goes with you on all your visits to the clinic. For want of a better description- 'carers' and close family such as children, have a pretty hard time coping with everything, not least the fear of losing the person they love- whether that be a partner or a parent.
We as patients get used to being the centre of attention - and because of that I think we sometimes forget to think about how 'significant others' might be coping.
As Rod says- men are generally not equipped to display their emotions at the best of times. This is how they are brought up- don't cry, be brave, be a man etc etc.
I think men do suffer the same as we women do- but rarely can they find a 'safe place' to express their fears and emotions.
Maybe you could try to find a way to support him by putting yourself in his shoes. If you show him that you understand he too might be struggling, then he is more likely to tell you his feelings without fear of hurting you.
Sandy
Yes, it is exactly the same with mine, Rod.It used to upset me a little, but now I understand their difficulty. I guess we as CMLers kind of underestimate how our families are feeling or trying to cope with it. A bit like expectant fathers used to be. The focus is on us but it's so hard for them, too.
I guess we all deal with it in our own ways,
All the best
Chrissie