Four reasons why I celebrate my endo-versary (and why you should too)!

A modified version of this post first appeared on The Mighty site on 10th August 2016. You can view the original here.

On Saturday I will be celebrating my second endo-versary, exactly two years to the day since I was diagnosed with endometriosis. I’ll be having brunch with some of my lovely endo-sisters and then cracking open a bottle of something sparkling and delicious with my husband in the evening. Chocolate may also be involved.

‘‘Hang on a moment…’’ I hear you cry, ‘‘why would you want to celebrate the day that you found out that you have a debilitating chronic illness that has led you to spend much of the last decade in varying degrees of pain and exhaustion?’’ This is fair question, but hear me out while I try and convince you that endo-versaries are a good thing for your mind and body, and that can help you to manage your endometriosis more effectively over the long term.

Cheers- to me! Another year survived.

Cheers- to me! Another year survived.

  1. It marks your first major win against the disease.

If you don’t know what’s causing your symptoms, it can be difficult to combat and manage them effectively. But for many women, getting a diagnosis of endometriosis is extremely hard. In fact, it takes women in the UK an average of 7.5 years from developing initial symptoms to getting a correct diagnosis- a trend that is mirrored across the globe. I myself was seeking answers for my pelvic pain and fatigue for 14 years and with over 20 doctors before finally gaining a correct diagnosis!

Fighting for my health while being so sick required infinite amounts of patience, determination, and self-belief- more than I ever believed I could possess. My efforts paid off in the end, and while gaining an endometriosis diagnosis has been devastating and life-changing, it has also enabled me to start taking control of my body and turning things around for the better. Who wouldn’t raise a glass (or two) to that?

  1. It offers an opportunity for reflection.

Life with endometriosis, or any chronic illness, can feel like a never ending and unwinnable battle. It can be easy to become discouraged and overly hard on yourself.

Having space for annual reflection can be a really helpful way of gaging how far you have come and what you’ve achieved in spite of being sick. It can also be useful for helping you to figure out what you want to work on or achieve over the coming year. For example, on my first endo-versary I reflected on how my time had been focused on coming to terms with my new diagnosis, and how far I’d come in working through my feelings of fear and grief. And now, approaching my secondary endo-versary I can see how this year has been about accessing and recovering from the surgery I needed to improve my quality of life. Over the next year, I will take on the formidable fertility fight in the hopes of having a baby. Looking back on how far I’ve come gives me a huge sense of achievement on how strong I’ve been, as well as bringing a new determination for the upcoming challenges I’ll face over the coming months.

  1. It opens up an avenue for awareness raising.

If you’re like me, you might limit the amount you post on your personal social media accounts about endometriosis and your own battle with the disease. I used to post a lot more but it was obvious that ‘compassion fatigue’ had set in and that my posts were having little impact. Posting about my endo-versary is a concrete way of revisiting the issue and helping to raise much needed awareness for endometriosis amongst family and friends. This will also help to remind them that I live with this disease 24/7 and that their help and support is much needed and greatly appreciated.

  1. It’s an excuse for some well-deserved pampering.

Like any celebration worth its name, an endo-versary is an excellent opportunity to indulge in a little pampering or ‘me time’- whatever you need most. So crack open the bubbly, or the chocolate, or go to a spa, or to the theatre, or bake cakes to eat with your girlfriends- whatever makes you feel good. You’ve made it through another year despite endometriosis- you’ve earned it!

If you're going to break your Endo-Diet, do it in style I say!

If you’re going to break your Endo-Diet, do it in style I say!

So there you have it. I hope you’re convinced and will start marking your endo-versary in whatever way you see fit, if you don’t already. But if not, that’s OK, but please know this. On the 13th August, as I toast my own successes and the journey to come, I shall raise my glass to you as well- all of you who live with endometriosis every day. You are all so strong and so brave, and without the support of many of you I’d probably be spending this endo-versary hiding under my bed crying. Cheers!

I’d love to hear your thoughts on this. Do you celebrate your endo-versary, and if so, how? Conversely, is it something you could never bring yourself to celebrate?

Love,
Claire
xxx

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?

Love,
Claire
xxx