This is a long post, but I urge that you read it all the way through. It's got a powerful message for women with endo and their partners. I also recommend you get your partner to read this too as they will hopefully find it useful.
My partner and I have been together 3 years, 4 months and 12 days (but who's counting). Of that time, in the first two months my pain was isolated to just over my period - so I managed to hide it well. He then spent 8 months in Canada (where he developed his love of ice hockey....Com'mon Oilers) by the time he returned home at the end of May I was patiently waiting on my consultants referral, and by the August he was holding my hand in A&E while I was being shot up with morphine for a ruptured ovarian cysts. The reason I give you our timeline is so you understand the majority of our time together has been dominated by pain, sickness, hospital visits and discussions about my cervix, ovaries and uterus that definitely wasn't pillow talk.
Over the years and years that I suffered before my diagnosis one night stands out in my memory as the night when everything changed. I woke at 3:30am in pain that I'd never experienced, I was scared, sweating and confused. I tried to move to get up but any slight movement felt like someone was running barbed wire through my pelvis. I crawled slowly and agonisingly to my kitchen where I rummaged for some paracetamol and ibuprofen, took the maximum I could and crawled back to bed. I lay there in a puddle of my own sweat freaking out, what the hell was happening to me? In the fear of the moment I genuinely believed I was dying.
I picked up my phone and called the only person in my world I knew would be awake at 3:30am because it was only 10:30pm where he was. A confused voice answered with a "hey, whats up?" Through my gasping breathes and sobs I explained the pain I was in. The whole time he stayed calm. He asked what stage of my cycle I was on (when I paused enough to work out where I was I realised I was ovulating). He asked if I normally got pain (I did but not like this). His questioning and calm voice reassured me I wasn't dying. He then talked at length about his day, distracting me long enough from the pain for it to settle. The next day I went straight to my Dr (that visit would led me to the consultant who would eventually diagnose the endometriosis).
That night, and every day and night ever since he has been my superman. On this endo rollercoaster he has been right in the seat beside me the whole time: every tear, tantrum, appointment, ache, pain, laugh, smile, surgery and treatment. He's held my hand, seen me at my very best, my worst, my most broken and defeated, during my recoveries, victories, achievements and successes. He's seen it all.
The cruel thing about endometriosis (and any chronic illness I guess) it doesn't just affect the individual, it infiltrates into every area of their lives and into the lives of the ones they love.
Chris supported me fully and never asked for any in return. Then one day as I lay curled up in a ball beside him on the bed, spending another day off in bed (and not in the way most young couples do). We had planned to spend our rare day off together doing something nice but no, once again my ovaries put an end to that, so here we lay. In the midst of the pain I turned to him and asked "Do you ever just get sick of this and get so pissed off?" Instead of his usually upbeat "not at all, I wouldn't change a thing" he simply replied "yeah I do." The words echoed in my ears.
You see no one actually chooses a life dominated by chronic illness, I've yet to see an episode of Take Me Out were the single lady's selling point is her stage IV endo. I don't remember the blind date contestants telling Cilla their dream lady would be stage IV but they would settle for stage III, II or I. I don't rate endometriosis as one of my most desirable qualities. I got mad at the disease, I hated it - I didn't hate myself. With all this in mind I decided to press him further (I mean don't get me wrong my instinctive reaction was to mildly over react, accuse him of wanting to leave me, cry and feel sorry for myself, but on this occasion better sense prevailed). 8 months apart while he was in Canada taught us to communicate, when all you have is conversation to keep a relationship going you learn how important it is to talk, be patient, listen, question any ambiguities and never make an assumption. I simply responded with "really?"
Over the next few hours we talked at length about how he felt. He hated the disease, not me - he truly admired me for how I deal with it, how I still managed to have a laugh, if possible I think he seen it as a strength other women didn't have. But he hated how it made me hurt, he hated that we couldn't do what other young couples do: we couldn't make plans, date night was regularly cancelled. He hated that he couldn't go out with his friends without consciously and subconsciously wondering how I was doing, was I ok, could he really be drinking in case he had to take me to hospital, should I really be home alone. He didn't like how he sometimes didn't have time to himself because he was at my side. Sometimes when I had consecutive bad days he felt overwhelmed that I hadn't been happy in so long. I was the woman he loved but something more powerful had gripped me and tortured me regularly. Endometriosis affected him so much but no one was supporting him.
Endometriosis impacts our partners so much. Of course he hated it, this has no impact on how he feels about me; he hated the disease and the circumstances it dictates. Since that night I have been able to support him and this has improved our relationship immensely. Sometimes we share a moment hating the disease together and complaining how it impacts our lives. When he is out with his friends I send him a quick message to let him know I’m feeling good so he can relax or that I am in pain but my mum, his mum, my friend or someone is looking after me so he doesn’t need to worry. If I am feeling sore on date night I light lots of candles and have a candlelit movie night or share a relaxing back rub – do something a little different than the usual evening in bed. If I am having a day when I am feeling good I tell him and ask if he would like to spend the evening playing the computer and I have something organised for myself to do.
Let you partner know its ok for them to be annoyed and frustrated at the disease, chances are they are scared to tell you in case they hurt you. Offer them an out (encourage them to go out with their friends, spend time doing something they like without you) when things get too much, because there will be times when everything gets on top of them. I have adapted a new attitude where I find myself saying we have endometriosis, not simply I have endometriosis. Just like us, endometriosis dictates our partners’ day to day lives; their present and their future. Like us, it never occurred to our partners that they would find themselves in a position where their lives would be dominated by endometriosis. But unlike us they can decide to walk away, they can remove the disease from their life but they choose not to; they choose to stay. For this and many things they deserve all the support we can give and believe me we can give plenty!
Available at facebook.com/theendodiary