A week in my Life as an Endometriosis
UK Volunteer
Running an Endometriosis support group, which I have done for around 8 years now, gives me great pleasure as I know that I am doing my bit to help others going through the same obstacles that I have been through , and that I still am going through.
Recently I have started thinking about what the role of being
a volunteer entails, and I have decided to record a ‘week in the life’ account of my personal experience of
volunteering.
My week begins, like most days, in the early hours of the
morning as I am scrolling through posts within the Facebook group “Endometriosis Chat Yorkshire”. This is
the group that I recently set up, for the group members, from Yorkshire, to
access and to help facilitate chat about Endometriosis; it enables local
knowledge and understanding and encourages mutual support, which I benefit from
greatly. I often fall asleep on the sofa and wake around mid-night, this is why I'm an e-owl; as I end up doing most of my browsing nocturnally!
For example, I had posted a question, about how pain can be described? due to a
very awkward appointment with my Gynaecologist, as the way in which I described
my cramping pain, as ‘burning’, was mocked.
I felt embarrassed and the incident upset me, so I turned to the on-line support group and shared my worries; and in return I was supported in droves, I was
reassured by those that know Endometriosis the most; those that live with it.
This group also enables members to directly access support from myself, and others; it enables me to signpost members to information and share any relevant or
interesting information from Endometriosis UK or in the news.
On waking I normally feel dreadful and it takes me a
little while to ‘come round’ (the endo-zombie fog) washing down my numerous pills and
supplements with a much needed caffeine free cuppa. I
always make-sure I check my support group emails and Facebook groups before I
set off to work just in case someone has made contact with a question or is in
need of support.
My email address endometriosissupportgroup@hotmail.com , which
I have had for as long as I have run the group, maybe 8 years now, is an important contact point for the support group; and I've had
emails from hundreds of women needing support. Currently I have 250 names on my
contact list, which I use to send out information regarding the activities of
the group (such as meeting information and fundraisers like The Primrose Ball). Often I
don’t hear from people for years but every now and then I get an email saying
thank you for keeping them in the loop; not everyone likes to make contact but
they do like the feeling of not being alone.
I encourage group members to join
social media for more daily ‘chat’ and I have a Twitter account and Facebook
page/ group. I check all these several times a day to ensure I am responding
quickly to anybody with an Endometriosis cry for help. I know it takes a lot
for women to share their personal information and I want them to know that
every word is important to me and I want to ensure they feel listened to;
responding quickly is important to me because I know it’s important to them.
This week I am running an Endometriosis support group meeting, so I sent email reminders to my group and also via
social media; just to let people know that there will be a Support Group meeting and what the topic will be. This month I will be looking
at pain management and medication; I will be sharing knowledge so I always make sure I
have visited the Endometriosis UK website and its available publications; to ensure the information that I am sharing is up to date and correct. I am very
careful not to share my opinions (ok sometimes it’s hard not to) but instead I
listen, and signpost to the right legitimate information, with an emphasis on
the Endometriosis UK charity being a primary source for information.
I have to ensure the location for the meeting is booked
in, paid for and and suitably ready; and prior to the meeting I make the 25
mile round trip to collect the keys so I can access the meeting room at the
weekend. I have often been known to forget this ‘key’ task and the last meeting
was spent in a pub because I could not access the building! Talking about wayward
vaginas in a crowded pub soon clears a perimeter! The problem with being unwell, and taking
medication, is my memory is poor and my own health difficulty can make running
a group harder (I have Fibromyalgia too). My contact at the Shipley Kirkgate Centre, where I hold my
meetings, kindly offered to meet me closer to home to collect the key next
time, maybe she sensed my stress, and this was very welcomed suggestion.
To prepare for the meeting I use the knowledge that I
already have, from my own experiences gained over 8 years and also talking with
others, and I referred to the Endometriosis UK publication “Treatment for Endometriosis” which lists
the general treatment (that’s treatment, never a cure) for Endometriosis
management.
https://www.endometriosis-uk.org/endometriosis-treatment
I never spend a long time preparing for meetings, as arriving to an
empty room that stays empty can be disheartening, and limiting my time invested
will limit my disappointment and help keep me objective about the end goal which is
to ensure that there is a place for women and their families can go.
The morning of the meeting I put together a small bag of
refreshments (excuse to eat biscuits), pack of leaflets and my Endometriosis UK questionnaires, tissues, and I make the round trip again. I'm always a
little bit hesitant before a meeting as I worry whether it will be helpful, if
people can find it and if anyone will actually turn up! I always arrive in good time just in case anyone arrives
early, and whilst I pop the kettle on I have a walk round the building (there
is an exhibition on). I take the opportunity to put up an Endometriosis UK
leaflet on the noticeboard and leave some in the info racks on the wall.
Today
I had just one group member attending the meeting (last time I had 9) and we chatted solidly for 3
hours, I don’t even know how we managed to chat that long without a drink or
toilet break! I have always felt that even if no-one attends then at least
there is a place to go for women and their families (and I get to eat all the
biscuits). Sometimes I have twelve bums on seats, sometimes I have one , but it’s
not about the number of people, it is about the opportunity to talk and speak
the language of Endometriosis, to share information and to lend a supportive ear
when it is needed.
This meeting makes me think that there is a void between diagnosis
(or realisation) and the varied appointments there-after; it can be a long wait
between each appointment and when the patient has contact with a medical
practitioner (often surgical) and it is these gaps where the questions are
raised, and the confusion and loneliness sets it. Women (and their families)
need access to support, need access to information and they need to be guided
along their journey. Endometriosis UK offers this through helplines and support
groups, but a link needs to be made between the charities services and the
referrer; or even better this care needs integrating within the actual care
package in the first place..
After the meeting I leave feeling moved; I feel very
strongly about some of the experiences had by the lady who attended the
meeting; Endometriosis misinformation that has populated her journey, and
which highlights how much damage can be done by someone who is trusted to know
the answers. I also feel drained, as the physical demands on what is my day
off, and the emotional investment of the meeting has left me feeling like I
need to rest; but I don’t mind because I know that I may have helped someone on
their Endometriosis Journey.
Today is my last day of the week (in the life of!) and I
have had a fab Idea, harnessing Social media, to spread the word. Sometimes I
forget my idea’s so I write them down. It’s an admin day today and first on the
list is the Primrose Ball! It is time to sort out the booking for the Park
Plaza so we can start running with the event; I promised my colleague (and
co-founder) Rosalind that I would get some balls rolling; we are so excited about
this event and this year it’s going to be bigger and better, especially because
Diary Doll are sponsoring us and lending us their support! I also have just had
a read of Rosalind’s blog, all about diet and healthy living for Endometriosis
and I am very proud that one of my local group members (and Yorkshire lass)
feels so impassioned about Endometriosis awareness and management too.
Finally it’s the last task of the week, apart for this
blog and chatting on my Facebook group, as I complete the EUK Support Group
survey, passing the information about my meeting onto the charity so they can
keep a record. Looking back at my week I see how intrinsic running an Endometriosis
Support Group is to my life, that for me it’s just what I do. I enjoy
empowering others, encouraging conversation and discussion, facilitation and
then seeing people make connections about things they share in common, and
opening up knowledge to those that need encouragement and guidance. Occasionally I have considered taking a back
step but just when I’ve got to the point of acting on that thought I have
received a card in the post, or an email in my inbox from someone who is
thankful and all-the-better for the support they have received, and I realise
that there is much work to be done yet and I'm absolutely not ready to hang up
my pink pants just yet!
Please find the links as referred to in the Blog
www.endometriosissupportgroup.co.uk - My own local support group website
www.facebook.com/groups/endometriosischatyorkshire Our Facebook Group
www.endometriosis-uk.org - Endometriosis UK website
www.endofitandhealthy.wordpress.com - Rosalind Kirkhams Endometriosis Blog
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