An Open Letter to Family and Friends
"We understand that your life is busy, ours used to be too. It can be very difficult knowing what to say or what to do when your friend or family members health situation is chronic and not going away. Don’t get tripped up on that though, we still want you in our lives."
Dear Chronic Pancreatitis
"When laying down with agonizing stabbing pain in your stomach, crying from loneliness and depression, and staying awake at night because the medicine has worn off, it is really hard to think that people have it worse than you. That day however I saw first hand how things can always be worse."
Don't Ask If You Don't Want To Know
"Through all the trials and tribulations you have brought me strength, courage, and a voice. You have brought me the ability to help others that are new to this horrible illness."
The Art of Accepting Chronic Illness
"Not talking about my journey stunted my mental healing process. I am sick of hearing, "deal with it," "you should just accept that you are sick," or my favourite, "it could be worse."
Invisible Disability - Open Your Eyes to What You Can't See
“Take time to rest and heal. Be depressed, be anxious, and be sad and angry when you need to be. You deserve to be all those things because your body has decided to wage war on you. Don't be stuck there forever, because you also deserve to live life to the fullest, without living in that place of fear and anxiety.”
The Side Effects Doctor's Fail To Mention
"So my EDS isn't visible (unless I'm in my wheelchair) and at times this can be really tough. I've often wished that I did 'look more' disabled. I've wondered whether I should get a walking stick (I don't need one) so that maybe then, someone would offer me a seat at the bus stop or on the train."
Friends with (Medical) Benefits
“Sometimes dealing with the physical side of an illness is the "easier" part. It's the psychological effects that the doctors didn't warn us about when we're diagnosed that can sometimes be the hardest hurdles to overcome.”
How I "Came Out" As a Cripple
"Maintaining relationships (not just lovey dovey ones) takes a lot of work. It should be 50/50 from each side. However, when you spend the majority of your life in the bathroom, sleeping and doped up on medication you can let your 50% slide."
You Deserve True Love
"In December last year, I became a part-time wheelchair user, due to the effects of my EDS. My main concern was how people I know would react to this. I thought about it and realised the best way to do it was through Facebook. So that's when I 'came out as a cripple'. And here's the status:"
A Day In The Life Of A Spoonie
"Human touch is such a vital part of our interaction. Whether plutonic, familial, or romantic, touch speaks volumes, when no words can express what we desire to communicate. Hugs equal happiness. Kisses Keep you captivated."
EDS: What It Is & How It Affects Me
"For once, I'm not worse than I was a week ago, a month ago. These are tiny wins, but they are wins. I'm far from cured, but there is life within me. I don't know when I've ever felt this way, like the hope I have is coming from me instead of from the outside world."
"I'll never be able to wear a pair of high heels, go ice skating, or run away from a crazed axe murderer. But I do have an electric wheelchair, so I could definitely have a go at running the crazed axe murderer over with my wheels."