I lost my friend to this disease



Two years ago, I lost my friend to this disease.

It didn’t kill her directly — it killed her indirectly, in bits and pieces, day by day, night by sleepless night, as it stole her identity, her pride, her independence, her joy.

It took and took until there was nothing left of the woman everyone knew as vivacious, outspoken and fun. Once in a while there were flashes of her old self, but more often than not, she was just “not there.”

She spent her days reading, sleeping, watching tv, shifting her position on the foam cushion that covered the couch. Medicine bottles lined up on the coffee table, in the medicine cabinet, next to her bed. Nothing really worked, but sometimes it would take the edge off long enough to get through the next hour, and then the next, and then the next after that.

We talked on the phone at least every other day, one of us calling the other to ask, “How are you? How is the pain?”

Sometimes we shared light stuff — funny incidents with our pets, our husbands, something we’d read. We’d talk about our latest doctor appointments, the next thing we were trying, what was new on the IC forums or the PNE front. We’d usually discuss the latest appointment, and which of our doctors were being assholes, because there were always assholes. And then we’d talk about the deep stuff: how were we ever going to ever get out of this pain, were we ever going to get our lives back, be able to go places, to the movies, a restaurant, travel to see our kids. Were we ever going to be able to take a long walk, sit without pain, have sex.

Four days before she died we talked about the “s” word. How some mornings we just didn’t want to face it again. Another day. More hours of pain and pills. More isolation. More loss. When our animals were suffering, we took them to the vet and they were quietly put to sleep. Why couldn’t we have the same privilege? We were suffering. We just wanted to be done.

I had no idea this was the last time I would talk to my friend. I miss her.


8 responses to “I lost my friend to this disease

  1. I completely 110% understand what you and your friend went through as I am in the exact same hole. Yes, I think of ‘the s word’ often too. I even have a plan for if I get to the point of no return, when there are no more options left to try. Somehow we manage to keep going, but how long for is the question most of us ask, as the days then months then years tick by. You have my deepest condolences. Your friend is finally no longer suffering. But the fact that she ever had to is the saddest thing of all. Sending you love, from a comrade in arms.

  2. Yes, the day I wrote this post was a very sad one. The day I got the message from her husband was the worst. I still miss her and wish she had given herself more time to find a way out… because there are ways out!!! Even if they aren’t your first choice, like getting a pain pump. I had to get to this same place before I was ready, and now I wish I had not waited so long!!! You are right, we are all “comrades in arms” marching together on the battlefield of this disease that can destroy us. We need to stick together and encourage one another!

  3. I found your blog through the icn forum, where I am also a member. I wanted to reach out to you and leave some comments as your blog seems so thoughtful and intelligent and compassionate. It is very saddening to think that perhaps a pain pump could have been the answer for your friend too…. Xoxox

  4. So sad hearing this! Maybe when friends husbands, partners find it hard to understand our illness(I look no different to anyone else, your compassionate letter would be a good thing to read!
    Ps I am a new subscriber

  5. Anne, thank you for subscribing and thank you for your comments. When I wrote this I was hopeful that it would somehow help others who are suffering. My friend would have liked that.

  6. Unlike a lot off other illnesses , this one (unless you are at a state off beyond, interestingly it is only when I am there that my partner notices) is so unique that there is no pathology no rash! No blood disorder , I still work, shop, look after my elderly mother! Only any other sufferer can have the compassion to truly understand!
    I read the beginning of a controversial book on religion
    ( the god delusion) and a very empassiond religious zealot wished the author”rectal cancer” afterwards thinking about this dreadfull hatefull proffercy, I thought, the symptoms of p.n.e may be don’t have the death penalty! But have the thought that we have to live with must be the same kind of pain for the foreseeable future! But I think the most damaging thing we can do is curl up and see our self as victims , I manage my pain with lyrica, amitriptalene and tramadol(when things are bad ! I still work , hairdresser/ artist! Distraction is my saviour!!! Please! No more sad sad stories, we have to be fighters! It’s the only way forwards
    Anne smith

  7. I am so sorry about your friend. I too consider the “S” word on a daily basis. I am exhausted and losing hope as each day passes. Where is a good place/forum to talk to others suffering from IC? I could use a friend like you.

  8. Lisa,
    I’m sorry you are suffering so much. You aren’t alone! Have you gone to the ICN (IC Network) forums? That’s where I’ve gone to post about my feelings, frustrations and even despair …. and I’ve met others there through private messaging. My name on the ICN forum is “ICsmiles” if you want to message me. The people I’ve met on either of these forums have kept me sane during the times I was in the most pain.

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