advocate

The saddest and worst thing has happened- my beloved dad passed away unexpectedly at the end of January. I am utterly heartbroken (as well as seven months pregnant).

My dad at my wedding. He was the most dedicated endo-warrior!

As this is an endometriosis blog I thought I’d share with you some of the ways that my dad impacted on my endometriosis journey, rather than focusing on his death. My dad was truly my endometriosis super hero and everybody needs one of those right?! Here are a just few of the reasons why:

-When I was diagnosed with endometriosis my dad spent hours reading all available scientific writings on endometriosis and making notes. I presume he was working on a cure 😀

-My dad came with me to both of my surgeries and supported me during my recovery, even though he was phobic of hospitals.

-My dad always believed me and never questioned my pain. He tried his best to help.

– My dad cried while watching the ‘Endo What?’ documentary and said that he can’t believe how strong women are.

-My dad donated regularly to Endometriosis UK.

-My dad once casually called me up at work to tell me he has been doing some research and that I need women’s health (pelvic) physio.I found this hilarious.

-My dad helped me out a bit financially so I could have a proper break from work following my most recent surgery to recover.

-My dad would gripe at how unfair it was that other people could get pregnant so easily while I was struggling. He constantly said that Mr B and I would make the best parents.

-My dad took every opportunity available to educate other people about endometriosis to raise awareness.

-My dad was easy to talk to about my health and was always checking on me when he knew I was struggling physically and/or emotionally.

I was hoping these things might be useful pointers for any other family members out there wanting to support a loved one with endometriosis but are feeling unsure what they can do. I can promise you that taking an interest and small actions mean a lot to somebody who is sick and scared. Be somebody’s superhero if you can!

I miss my dad so much- he really was the best. Living well with endometriosis is going to be that much harder without him by my side.

If you have any other tips about how family have supported you on your endometriosis journey I would love to hear them. Or it doesn’t even have to be family- what is the nicest thing another person has done to support you since you’ve gotten sick?

With love,
Claire
xxx

Exciting news update- I’m now trained as a volunteer advocate for Endometriosis UK! 🙂 This means that I will be helping women with endometriosis in England to address some of the difficulties they are experiencing as a consequence of living with the disease. Advocacy support could relate to anything from accessing healthcare services and employment disputes to exploring coping mechanisms for the development of better mental health. You can find out more about the Endometriosis UK Advocacy Support here.

I’m feeling really grateful for this opportunity, and will give as much as I can to the role to help women with endometriosis lead as pain free and fulfilling lives as possible. We all know that having endometriosis (or any chronic illness for that matter) can be so soul-destroying and isolating at times, and can impact on every aspect of life. From reading this blog you may know that my own story with endometriosis has deeply affected my mental health, working life, body image, and friendships- and I know that my story is probably your story too.

Six months post surgery: Feeling good and ready to kick endo-butt!

Now I am feeling much better physically post-surgery (I haven’t take a single pain killer in 5 months- I used to take 8 a day for 4 years!), I felt it was time to step up my fight against this disease with some positive action. Mighty Endo-Lady lives on! I’m a big fan of charity volunteering anyway and also currently volunteer for Age UK as a befriender. I know how much I could have benefited from an advocacy service in the past, and hope the women who are lucky enough to use it find it informative and useful.

I’m always keen to hear about your experiences of programs and projects in your own communities which work to support women with endometriosis- either as a service user or volunteer. If we keep working toegther we can make a difference to people’s lives and create greater awareness of this awful condition.

Love,
Claire
xx

The Endo The World?

Tales of life and love with Endometriosis.

My endometriosis superhero.

I’m now a volunteer advocate!