My husband wrote about what it is like caring for someone with Endometriosis

March is awareness month for Endometriosis. Rather than me writing about my journey with it, co-fonder of Endometriosis Australia, Donna Ciccia, suggested Rav write a piece. As usual, he blew me away with his love and honesty.

When you marry your partner you take them in sickness and in health, and I knew when I was marrying Sarah Maree Cameron that she had more health issues than the average person. We were only a few weeks into dating when I learnt that Endometriosis was going to be a big part of our relationship.

I remember the first BBQ where I met my wife; her beautiful make-up, her stunning hair, how articulate she was, all of which made me weak at the knees and still does to this day. I thought “Wow, this woman is amazing”. I also remember the first few flare ups Sarah had due to her Endometriosis, wondering how I could help and hoping they go away quickly. Sometimes they do and other times you need to make a trip to the hospital because there isn’t anything else you can do at home to take the pain away. I often have to convince Sarah to go to the hospital when I can tell she really needs to go because often she doesn’t want to “clog up” the emergency room for what she says won’t kill her.

I am a worrier though. All of my friends say I stress too much but the thing I worry about the most is  if I leave Sarah for too long that I may not be there when she does have a flare up. I worry that she will have such a bad flare up that she will have a migraine and won’t be able to drive. I worry that she won’t have any heat packs or pain killers with her. I just worry. In that worry, I can lose myself.

Partners or carers for anyone with a chronic illness would feel guilty for saying this outloud but you give up a lot to look after the ones you love. You give up going to the pub with your mates because how could you possibly enjoy yourself when your wife is curled up at home in bed due to her pain? How could you go away on a boys trip away when the person you love can’t even drive to the shops to get groceries because their flare up is so bad that they can’t stand up straight? So you turn down offers to go out. You make up excuses as to why you’re not going out because you fear your mates won’t understand. You tell your mates “next time” but some of your mates stop asking.  And so, the worrying continues.

1 in 10 women have Endometriosis and yet so many don’t know about it. It can be hard for men to talk about but I feel like I have gotten an honours degree in gynaecology due to Sarah’s medical issues (Endometriosis, Adenomyosis, Polycystic Ovarian Syndrome, Cervical Cancer). I can rattle off Endo stats as quickly as I can tell you about my beloved Manly Sea Eagles and Sydney Swans. I have also learnt what works best to relieve her pain so that we can be proactive and not reactive to her symptoms. Heat packs work well so I have got them scattered around the house for when Sarah needs them (you should see how quickly I can get to the microwave). I would like to add that we are onto our second microwave in this relationship as the first one burnt out. I also discovered stick-on heat pads, which help Sarah get through pain while out of the house.

The day we got engaged.

The day we got engaged.

We have a few friends in our circle who also have Endo, all with varying pain and symptoms. It is great to be able to speak with your mates about how they help their partners but I have met some people that have their head in the sand about the condition. You need to fully understand what Endo can do to a woman’s body. You need to sign up to being a spokesperson to help end the silence. You need to know that it can only be diagnosed through surgical intervention. You need to know that some women will only have one surgery and others, like my wife, will need them every 6-12 months. You need to know that it doesn’t matter if you’ve planned to go camping or hiking for the weekend; if Endo visits, then you may have to stay home. You also need to know when to encourage sufferers to get out of the house, go to the gym on the good days and watch their diet so they aren’t having food that could cause a flare up.

I’m not just Sarah’s husband, I am her Endo husband. It’s easy as a carer to take on more responsibility around the house but I need to keep an eye out for when Sarah is getting frustrated. Who would have thought someone could be so desperate to do housework? I often hear Sarah say “I can do it” when her face is telling me that she can’t. I had to learn when to let her push through the pain doing a simple task like gardening and when I have to step in because she can’t bend over anymore. Once you master this fine line of knowing when to help or take over a task, it will strengthen your relationship.

Endometriosis will teach you a lot about yourself as a person and will prove the strength of a relationship, but most importantly it will teach you to do what needs to be done and use this as motivation to achieve your goals. It also teaches you that there is no such thing as “too much information”; details are not spared. I am more than happy to talk to family, friends or strangers about Endometriosis because it needs to be talked about. I am happy to be part of what is normally seen as a female community, because I want to be a supportive partner. I want to be the best Endo husband ever.

Sarah Maree works with Endometriosis Australia hosting events and helping raise awareness to educate people, open up dialog for the disease and campaign for a cure. For more information or to make a donation, please head to www.endometriosisaustralia.org

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