Holding It Together While Living with Mesothelioma

• Lisa Hyde-Barrett
• Uncategorized

Over the many years I have been fighting mesothelioma I often have the same question asked of me, “How do you hold it together?”

To be honest it is hard. I am trying to be strong for my family and friends, but I am afraid that any sign of weakness will let them down or show that I am not willing to fight to spend more time with them.

Others I’ve talked to who are mesothelioma survivors agree that it is hard to keep smiling when the doctors knock the positivity right out of us all, always giving the grim news on diagnosis that we have less than 12 months to live.  Not only does that affect us, but it also affects our loved ones. They then feel they have to be strong for us and not show any weakness either.

I have known some people who have been diagnosed with mesothelioma seemingly ignore the fact that they are sick. This approach then makes it harder for the family because they think their loved one is hiding away and not facing up to the grim prognosis given. In truth most mesothelioma patients don’t ignore it or try to hide, they just don’t know how to deal with the diagnosis and believe this way they are being strong for everyone else.

For those of us who accept it off the cuff, we decide there and then that we won’t be beaten and put on our battle face.  The only problem is that we forget to take it off and reach out. Then as our treatments wear us down, we believe we can’t let our loved ones know how bad we feel; we are ‘leading by example,’ we are ‘coping and fighting.’  Yet sometimes inside we do want someone to say to us ‘It will be fine,’ or ‘You’re just having a bad day.’ Instead we find we can’t share our worries with them for fear that any mention of the word mesothelioma will end the conversation. Our partners don’t want to think those bad days or those new pains are cancer related. Doing so means they may have to face up to their own worries, and their hold over their own emotions may fall.

Who Are We Being Strong For?

We are all being strong for ourselves, our family, our loved ones who mean more to us than life itself, but then we deny ourselves those bad days when we can’t cope.  The longer we keep that battle face on, the harder it is to break down and say, “Hey, I’m not coping as well as you think.”  And because we have that battle face, our families and friends do too, which means they can’t say it either.

Finding a balance where partners can be truthful and honest is difficult.  So how do we break this chain reaction? I’m not sure everyone can.  There are families that can face up to mesothelioma together and discuss it, they share the pain, the worry and the fight.  Unfortunately, not everyone can do the same. Deciding to share your battle with mesothelioma in a way that works for you can help ease some of the emotional strain.

I started a journal at first, pouring everything out, but then I was afraid my husband would read it and think I was weak or I couldn’t cope, so I started a blog, which he does not read. To me it was a release to talk about my pain, anguish and life, and I knew others were out there were feeling the same.  I hope my blog will tell them realize it is ok to feel this way or that pain can be normal. Maybe by reading what I have written, they too will find a release.

So how do I hold it together?  All I can say is I just do.