It’s my first endo-versary! I’ve learned so much this year.

It’s my endo-versary today- exactly one year since I received my endometriosis diagnosis following my laparoscopy at Addenbrooke’s hospital.  I have decided to celebrate the occasion with Mr B, dinner, and prosecco, because my diagnosis was so hard fought for. If you aren’t familiar with my story, you can read about it here or here.

Cheers- to me!

Cheers- to me!

Hitting the one year mark has prompted me to stop and reflect on my post-diagnosis journey so far. It’s been one hell of a roller-coaster ride, and I (rather naively perhaps) wasn’t prepared for what was in store for me. In the spirit of sharing, I have listed the five most important things I have learned this year that I thought might be helpful to other people newly diagnosed with endometriosis or a chronic illness.

A diagnosis is very much the beginning of the journey, not the final destination.

Sitting in my hospital bed after waking up from my surgery, my surgeon told me the news that I have severe endometriosis. I was absolutely elated because: a) it was proof I wasn’t crazy and imaging all my symptoms, b) I thought it meant that everyone would now take care of me, and c) I was excited about getting some treatment. I was SO VERY WRONG! Nothing actually turned out to be that simple, which has been frustrating and infuriating at times. Work, my doctors, and my friends didn’t seem to know what to do with me, and I certainly didn’t know what to do with myself. But now, one year on, I’m walking the road of progress very slowly each day, trying to figure out how to lead a good life despite chronic pain and fatigue. I’m confident that I will master it one day.

It’s OK to be VERY angry and sad.

I never knew I could cry so hard or so often as I have this year. These massive tears of anger and grief for what has happened and for what I’m scared my future will be. I’m surprised I haven’t dissolved my eyes. This sort of reaction goes against the spirit of how we are traditionally encouraged to cope with illness in our society- by staying positive, fighting hard, and keeping a stiff upper lip.

I did not do any of these things very well in public, although I did try, but in private I went through what turned out to be a pretty epic breakdown. I couldn’t reconcile or accept this life that I’m living with how I want my life to be- and this is still a work in progress. I also hated everyone in my life at times in a slightly hilarious teenage foot stamping way- for not understanding, for not being there.

But guess what? I’ve learned that is perfectly OK to feel like this. Politely ignore the people who tell you to ‘rise above, fight, and think positive’ when you need to and take the time you need to work though all of your emotions- the good and bad. Receiving a diagnosis of a chronic and complicated illness like endo is a huge shock to the system, more so than I ever anticipated.  You can’t predict how you will react and you don’t need to justify how you cope with it. Having some time to think things through, and grieve, and be angry may be what you need to move forward. If you can though, don’t let it rule your life. Maintaining your closest ties to family and friends is so important too and will help in the long term.

Connecting with other people with endometriosis and/or chronic health conditions is a lifesaver.

Discovering the spoonie community on Facebook and Twitter and joining a local support group has helped me retain some resemblance of sanity this year. They have been a safe haven from the well-meaning but STUPID comments you get from your healthy family and peers (‘Have you tried taking vitamins?’ ‘If they can cure cancer I’m sue they can cure what you have!’ and ‘You just need to think positive’ have been my personal favourites this year).

Meeting and chatting to other young people living with chronic pain and fatigue has taught me so much and made me realise that I’m not alone, and that I can go on to achieve things despite being ill.  I think I’ve also become a more understanding and sensitive friend this year too, which can only be a good thing and will enrich my life for years to come 🙂

Putting yourself first will not cause the world to end.

I’m one of those girls that wants to make every happy and cause no fuss or drama. There came a point this year when I realised some fuss  was very much needed if I am to keep going. I’ve stopped going to social events I feel too unwell to attend, disclosed my difficulties at work and requested some reasonable adjustments, and have stopped feeling the need to justify my actions, like how I can exercise when ill, to the naysayers. The world hasn’t stopped and people don’t hate me (well, I don’t think they do!).

Sure, some of the people I’d thought of as friends have now disappeared from my life- they can’t cope with how things of changed- but they are better off out of my life anyway if this is the case. The silver lining is that your true friends really step up into action if you talk to them about what you’ve been going through. That’s meant so much to me and has been a great lesson about what is important.

Life will never be the same again.

Having a chronic illness requires you to totally change the way you structure and live your life, because it’s not going to go away and no amount of ‘fighting’ will change that (sorry healthy people). I won’t ‘win’ this battle, but I’m determined not to be the looser either, and to do this I need to work with understanding and partnership with my illness.

I’m still getting to grips with this, I’ve learned it isn’t something that you can master over night. Sometimes I overdo things and exhaust myself. Other times, I miss deadlines because I’ve been resting a little too much. But I’m certainly getting there. I’m not sure what the future holds, and I’m completely terrified about it- Will I have children? What job will I be able to get and hold down after my PhD? Will I even be able to finish my PhD? But I trust that I can cope. I have come so far and achieved so much despite being ill. I am super girl and I will get through this.

I’d love to hear where you celebrate your endo-versary or another diagnosis date! If so, how do you do it? What’s the biggest life lesson you have learned since that day?