Jump to content
New registrants - please do NOT register using your real name (or anything resembling such) - your privacy is important to us and real-name registrations will be deleted. Please re-register with an anonymous display name. ×
  • entries
    7
  • comments
    29
  • views
    360

LisaButterfly

64 views

How did you feel the first time you were validated? From my own experience and so many others I know, the answer seems to be 'relieved'. Living with a truth you know to be real, all by yourself, can be lonely, tormenting, frustrating and confusing. Then you find a voice, risk using it and someone says, "I believe you". They then offer support you never thought you deserved or were entitled to, they validate your trauma and the aftermath you carry and offer the comfort you've craved for far too long. Your strange behaviours are finally understood and that relieves the pressure to perform in your 'I'm OK mask'. You're given space to feel like crap, encouraged to 'let it all out' rather than 'hold it all in' to keep everyone around you happy, and you're respected for even the smallest achievements... because the magnitude of your experience and the profound effect it's had on you is out in the open and taken seriously. 

"I believe you" - three important words. The golden ticket to the help you need to process it all, and it's not just about eligibility and access, it's about how you can now, finally, allow yourself to redeem that ticket and accept the support. 

It's not always as straight forward as that though, is it. Sometimes there can be a battle with ourselves and others. I'm hugely grateful that I haven't had any battles with others during the process that brought me to After Silence, but I have had conflicts with myself... as I know many of you have as well. I'm working through that war with myself (in the right direction) and hope you're able to do the same. The experiences I've had trying to be heard by those who are meant to be looking after my physical health have been dramatically different. I'm going to have a cathartic vent about it here, as well as highlighting the unexpected positive outcome that has brought relief with it - all because of a voice I never thought I'd be allowed to use. 

The purpose of this blog entry is to paint a picture with words that might help me (and hopefully you) compartmentalise the snowball effect (or butterfly effect in my case) this journey creates - from those first, vitally important, validating three words to the realisation that what you've experienced, and what you're going through now, is serious enough to matter. 

I felt compelled to use this therapeutic platform after an appointment with my rheumatology consultant on 16th December. I spent weeks before the appointment tormenting myself with premonitions of being minimalised, brushed off and blamed as I have been throughout my adult years, by doctors and my abuser. I was preparing for a fight - but also expecting myself to roll over and accept the usual apathetic response in the consulting room. 

For as long as I can remember I've been hypermobile with widespread pain, unstable joints and muscles, unexplained bruising and a variety of other symptoms that have been disabling, lifechanging and, unfortunately, ignored by medical professionals. I've used my wheelchair (freedom machine) for a number of years but doctors have never been able to explain why I've lost my mobility, apart from suggesting I should exercise more, which has cultivated a proper petri-dish of shame, self-blame, confusion, fear and a belief that I'm a weak, lazy hypochondriac. Whenever someone says, "if you don't use it you'll lose it," "she could do with the exercise," "she likes the attention," or "she's just faking it," the destructive mould grows, over-flows and settles in even more. All because a fibromyalgia diagnosis doesn't fit with my symptoms and certainly doesn't explain why they've got progressively worse over the years. 

My GP told me years ago that I had problems with my connective tissue but I've never had a concrete diagnosis with a treatment plan to help manage the condition. My dad, brother and I share the same symptoms, I didn't walk until I was 18 months old and have always had pain, I dislocate easily and was famous for my 'bendy body' party tricks in my youth... all the answers were there from the start but I've never had the courage or sense of self-worth to ask the right questions and fight for help. 

Last Wednesday, while my consultant was casually minimalising my symptoms and sending me along her conveyor belt as quickly as possible, I used the voice and self-worth I found during the aftermath (and healing journey) that brought me here and said, "I'm in so much pain I want to die." I lost it and begged for help, I panicked, listed my symptoms, yet again, and with my brand-new nice but firm 'I'm not a doormat' demeanour I asked for answers. 

After being bent about, prodded and questioned, the consultant expressed belief in me by giving me a diagnosis of Hypermobile Elhers Danlos Syndrome (hEDS). It's the least serious, most common form of EDS but explains why I'm in the physical state I'm in now. It's a disorder I was born with, and if it's not managed properly it causes damage to connective tissue and nerves. Symtoms are progressive and it's normal (and acceptable) for those with hEDS to need a wheelchair. It's a real, physical condition that I couldn't have made up or exaggerated. It's not my fault, I'm not to blame for the loss of mobility and when the next insensitive, judgmental idiot questions my need for a wheelchair I can metaphorically hit them with a medical label I'm still learning to pronounce.

The battle to be heard is over. During my trauma therapy my counsellor suggested I learn to like and value my body, but it's tough to do that when the only thing that doesn't hurt is your hair and you have no idea why. It's challenging to value a body that constantly let's you down and frightens you, which makes emotional recovery after rape difficult and triggering. I'm relieved I have answers, my head feels calmer and I don't have a thousand questions swirling round my messed up head, all because I used my voice and stood up for myself. I now have the answers I've craved for years, I feel I can get to know my body without self-blame and constant questioning of my sanity, I'm starting to feel like a proper adult, I'm proud of my voice and I'm feeling a little stronger...

...and it all started this summer when I voiced secrets from my past to a friend and he said, "I believe you." 

2 Comments


Recommended Comments

I am so very happy and proud of you for standing up for yourself! The strong, powerful woman you are is using her voice and it is making a difference. What a great result to be able to have a diagnosis for all the physical pain and suffering you have been experiencing so you can continue to get the hell you need and deserve.

Link to comment

Thank you @Hope321 - your kind words mean so much! I've always held that 'I'm OK mask' on, since I was a kid, but I knew I needed to speak up, be honest and say how I really felt to get the help I need. My voice has always been so quiet when I have tried using it with the doctors, and with each 'brush off', over so many years, it just made me smaller. This year has been a turning point though. It's all because I've been working through my past, rewriting my part in the story and feeling like I matter enough to ask for help and persist with it now. Breaking the silence certainly has a positive effect! Hope you're doing ok - you've been in my thoughts. Thanks so much again. 

Link to comment

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...