Steph May Heads Shares Her Journey

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Join Stephanie as she shares her journey living with EDS, Fibromyalgia, and body dystrophic disorder. Please be considerate of Stephanie and her journey.

Learn about EDS (Ehlers Danlos Syndrome) here http://ehlers-danlos.com/what-is-eds/

What is Fibromyalgia http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243

Learn about body dysmorphic disorder http://www.mayoclinic.org/diseases-conditions/body-dysmorphic-disorder/home/ovc-20200935

I am from Newcastle upon Tyne UK but now live in Selby, North Yorkshire UK with my partner and our two boys. I am 30 years old. I have Ehlers Danlos Syndrome type 3 and fibromyalgia and also suffer with a mental illness called Body dysmorphic disorder. I love art and find writing poetry and making art journals very theraputic, helping me deal with alot of the emotions and pain associated with Eds, Fibro and Bdd.

Life changed dramatically during my first pregnancy. I was 20. Growing up I always suffered with joint pain, migraines and chronic fatigue, as well as many other problems such as bowel and bladder problems. These problems got worse when I started my periods and then worse again during pregnancy. Since my pregnancy my health has continued to change and a second pregnancy resulted in more damage to my pelvis, spine and mental health also.

It is hard to say what life was like before my diagnosis as it seems my diagnosis is forever changing. Some doctors believe in my condition and others don’t. My whole life has been spent arguing with doctors and specialists, going backwards and forwards. I am still fighting to be heard.

Being told I suffer with Eds has at least reassured me that all the pain and difficulties are not just in my head but then it changes and I see a different doctor who tells me that eds is not real and I am left feeling mad again. Being diagnosed with BDD was a relief. It meant I had a name for what was wrong with me, a reason for why I sometimes behave and think the way I do. It was a relief but unfortunately doesn’t change the way the illness affects me physically and mentally.

A day in the life of me… anxiety, fighting through physical pain and fatigue just to do basic tasks. I get very frustrated when I struggle to do things like getting down on the floor to play cars with my children. I fight off depression daily and work around medication, rest and routine in an attempt to manage daily life. Living with Bdd means l am constantly anxious, I never relax and have daily obsessive rituals that I struggle to control, such as compulsive skin picking, brushing my teeth too much and constantly thinking about how ugly and repulsive I am all day, every day. I find the combination of physical illness and mental illness is exhausting; a permanent battle to attemp a “normal” life, whatever that is. Personally I don’t believe in normal as everyone is unique and different so who’s to say what’s normal?
The most challenging things I have faced because of my illnesses is the constant fight to be heard. The constant judgements of others and the pain I have to deal with every day without much understanding and support from the medical professionals that I meet.

I find that I cannot keep up with others. I miss out on alot of things thanks to my illnesses. I often have to cancel plans or leave early which affects my relationships with others. My anxiety issues also affect my ability to keep up with others and quite often I avoid people to avoid causing myself and others more issues. I feel older than other people my age.

I would tell others who are living with my diagnosis to never give up. Never stop fighting, research as much as you can. Knowledge is strength. Talk to others with the same condition/s. Knowing you are not alone helps and we learn from eachother as well as offer eachother support. I would also suggest trying to find a hobby or outlet. Something that allows you to express yourself and be yourself regardless of ability. For me that is art and poetry. It helps me a great deal.

For the people who don’t have the same illness/conditions I would say never judge and be patient with others. Be kind. You never know what a person is dealing with physically and mentally. They may look fine on the outside but be suffering alot. Disability and illness has many forms and not all are visible. I’d also say that people should never take their health or their loved ones for granted. Be kind and always try to educate yourselves as much as you can.

My journey has taught me such amazing strength and determination. It has taught me to never give up and keep fighting as hard as you can. Learn as much as you can and it has taught me to never take anything for granted.

You can read some of Stephanie’s poems on her blog page here https://annawerrunblog.wordpress.com/steph-may-heads-blog-page/

Thank you so much Stephanie for sharing your story. You truly are strong woman. I agree with you that we must research as much as we can, and that we must continue to keep fighting. You are a brave soul.

Hopeful always.

💗Anna

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