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Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Bee the Change - 1


Bee the Change

Yes Ladies and Gents, our first 'Bee the Change' post featuring individuals voices on what they believe needs to change, feel free to comment whether you agree and if you have a 'Bee the Change' opinion.

Lets get started:

Steph DeCarlo - 'When you change the way you look at things the things you look at will change.'

Alice Swain - 'What I wish I could change is the judgement directed towards invisible illness. Being an atheist, I completely understand that it’s hard to believe in things that you can’t see. Although It’s a little different when it’s a human being standing infront of you trying their hardest to explain the pain they’re in. I will never ask for anyone to fully understand an illness they have never experienced but a little compassion and empathy goes a long way. Just because you may not be able to see my disability/illness doesn’t mean it doesn’t exist or is any less debilitating. It affects me every single day. They call it “invisible illness” but I know people can see the purple bags under my eyes from fatigue and lack of sleep. I know people can see how much slower and weaker I am since this illness took over. All I ask is for people to believe me when I talk about my pain or my symptoms. And for people to respect it when I say I cannot do certain things or make an event because of said or other health related issues. Invisible illnesses may not be obvious but they’re very, painfully real.'

Ruth Anderson - 'If there's one thing I wish society understood about anxiety, it's that it is so much more than feeling worried. It's a tightness in your chest; uncontrollable butterflies in your stomach 24 hours a day and only sleeping a few hours each night. It is a force which can keep you indoors, no matter how much you long for the sun upon your face. No amount of words of encouragement can force you over the hurdle and a motivational quote won't make it disappear. I wish society knew this so maybe I would have known, too. I would have asked for help sooner, rather than trying to wish it away, or fight harder against it. Anxiety is an illness - a very real, crippling illness - which can get better, but only when you ask for help.'

Pamela Jessen - 'I wish that more doctors would recognize that Fibromyalgia is a REAL disease with real patients and real consequences to their lives. Fibro affects our lives in so many ways, with chronic pain, fatigue, nausea, numbness, balance issues, irritability, depression, headaches, bladder and bowel issues and so much more. These aren't things we've suddenly dreamed up because of "stress". These are medically documented effects because of the nerves not reading pain signals properly - hence, Fibro. Fibro is NOT an autoimmune disorder as it doesn't cause inflammation, but it can mimic other autoimmune disorders like Lupus and MS until it has been properly diagnosed. Doctors need to remember that the 18 Tender Point test is still the gold standard in diagnosing this disease after ruling out everything else. I wish more doctors would remember these facts and remember that this disease affects every aspect of our lives. Not only our lives being turned upside down, but so our are loved ones. We want your help, not your disbelief.'

Keeya Steel - 'What about the connection to MCAS? I wish this would be studied more and that people with fibromyalgia would be offered testing for MCAS.'

If you wish to get involved with our 'Bee the Change', then feel free to contact us on Facebook, or our Contact page, and we'll get back to you as soon as possible ... we look forward to hearing your Changes.

Until next Monday,

Bethany S.

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