The only reason I write the deeply personal things I do is in the hope that if I say them out loud it might help someone who struggles with thinking these things and it may help them feel less alone.

That’s my hope anyway…

Many times (too many than I care to admit) I feel enormous guilt for the life I have placed on my marriage. I feel lower than a bottomless pit for what my illnesses has done. I look at my husband and I feel so much pain for all that he goes through that I swear it’s hard to breathe. He deserves more. So. Much. More.

I became very ill even before we married. I could barely walk and I was little more than a body on a bed and so I told him to leave me. I yelled at him to leave me and I told him how I didn’t want his pity or blind devotion. But he still stayed.

I have done this many more times since we got married and when my flares are at their worse (like now), and he still stays. Sometimes I am torn between wanting him to have a normal life with someone else who can dance, drive, run, play and live but also feeling completely devastated if he was to go and I would have to cope with all this alone… as well as missing him. My closest and dearest friend. I grieve the life we could of had everyday of my marriage. It’s cruel.

There seems to be no right answer. Not one I can choose anyway. I am damned either way.

I have to comfort myself with the fact that I assure him he is free to choose for himself, although I am sure he is probably facing a similar dilemma if I put myself in his shoes. He must face the pain of going and the pain of staying too! … But he always answers me by saying he wants to be here. He even says it instantly, without needing time to think it over. Perhaps he already has? I will never know. I can never know how he reaches his answers I just have to believe.

Perhaps that’s the most confusing thing about it all.

Who would want to be here for this? For the tears? For the endless pain? The 2 am crying? The falls? The depressing struggles? The humiliating symptoms? The doctors appointments? The lack of answers sometimes? The zombie like existence?? the helplessness? Who would want to be around for all that? Not even family want to have anything to do with it!

But this person does. This one person out of seven billion on the planet. And I don’t think I will ever understand it.

Today I asked again. I couldn’t help myself. Is it reassurance? I don’t know. But I asked again. I try not to frustrate things by adding additional problems and worries, but I asked anyway…

Will this be enough for you? I asked. He said yes. I cried.

Will it happen again? Probably. When flares like this happen and life is little more than a blur of pain, fatigue and sadness then it is almost guaranteed that I will ask again. I don’t want to live my life out of pity. I don’t want to be the sorry tale that people whisper amongst themselves or the stuff of hallmark movies. I don’t want that! I don’t want to be someone’s cautionary tale or sad footnote to life. …But still he stays!

Maybe on some level I think if this life is enough for him than maybe it can be enough for me too? Maybe?

I try to force myself to look around my bedroom and think none of this would be possible without love and strength. None of it. None of this would exist or be here without the love, strength and devotion we share.

I am reminded of so many marriages that have failed for so many reasons, and none of them even touch the surface of what a marriage with someone with chronic illness are forced to deal with! The Taj Mahal stands as a testimony to the love between two people, two healthy people capable of normal lives together, yet no monument could possibly embody the love, devotion, care, patience, persistence and courage needed to be with someone who struggles everyday of their lives and with whom you can not have a conventional marriage. Nothing. But those who are in such marriages don’t need a statue or a palace. Our little home will be the only thing we leave for the rest of the world and no one will ever know the incredible battles and struggles that take place every day inside its walls.

I hope this deeply personal revelation helps someone else out there. I hope you read this and feel not so alone. Because these challenges are the loneliest things on earth.

Gentle hugs,

Trish.