Frank Fridays : the realities of being a disabled parent
I’m honest with my friends about my health struggles, and I also write for The Mighty about some of my experiences. Now I feel it’s time to open up to you, the Mummykind family.
The truth is that my health is often poor, but I don’t make a habit of advertising it. Honestly, I find it so difficult to be honest about my struggles as a disabled mum, because so often people hit me with ‘if you’re disabled, don’t you think it was selfish to have a baby?’. It stings because they don’t understand that I’m a good mum, only that I have difficulties and that must mean I’m a bad parent, right?
Newsflash. EVERYONE has difficulties. It’s how you deal with it that matters.
I’ll try and keep the medical jargon to a minimum while explaining some of what I have to deal with day to day – having dealt with some of my conditions since birth I’ve been told that I sound like I ate a medical textbook!
I currently have seven conditions diagnosed, with more in the pipeline (lucky me, eh!)
Ehlers-Danlos Syndrome – This is one of my most prevalent illnesses. I was born with EDS, and while every day is different, most days are an uphill struggle. EDS is a rare condition that affects connective tissues. Connective tissues are present in skin, organs, blood vessels, muscles, tendons, ligaments and bones (so basically everything). Symptoms I deal with every day are loose, unstable joints that dislocate every day, chronic pain, easy bruising, muscle weakness, fatigue, and problems with internal organs.
Orthostatic Hypotension – When my new Orthopaedic Surgeon heard I had this, he said ‘really? But you aren’t old!’. Well, newsflash Mr, young people can have Orthostatic Hypotension too. Put basically, when I change position from lying to sitting, or sitting to standing, my blood pressure plummets to dangerous levels, and I lose consciousness and faint.