Living with Chronic Illness
Donation protected
Hi, my name is Whitney. And I still don’t feel completely worthy of asking for help. This isn’t cancer. This isn’t heart surgery. Even though many times I’ve wished it were something so cut and dry. Something that had only two outcomes- a cure or death. But this isn’t that. This is waiting. This is never-ending weeks of hope and weeks of despair. This is trying to live with your mind splitting in two. One half trying to get better, hoping, struggling for answers. One half struggling for acceptance, trying to learn how to make a life out of all the scraps of the old one. This is chronic illness.
the facts of the matter are:
- I am disabled by fatigue, weakness and pain.
- I am diagnosed with myalgic encephalomyelitis, gastroparesis, hereditary hemochromatosis, hypermobility spectrum disorder, myofascial pain syndrome, and chronic hyperventilation syndrome.
- these diagnoses help explain but do not encompass the full spectrum of what my body experiences.
- I don’t know if I’ll ever get better.
- I would easily risk my life to get better
- I could spend millions of dollars to try everything that could possibly help and I would if I could.
- I cannot work due to my illnesses.
- I have enough work credits to qualify for disability.
- My disability determination was denied and is now pending reconsideration.
- I have no guarantee that I will ever receive disability and if I do it may take years, despite having records of my illnesses from almost 20 years. Many people wait for years, become homeless, sometimes die waiting for disability approval.
- I am lucky to have my parents covering my, and my daughters, basic needs. I would love to be able to remove some of the burden from my parents, even though they’ve been more than happy to help.
I have experienced chronic illness since I was 13 years old, after contracting a viral infection that caused an autoimmune response. I was still able to live my life despite limiting symptoms. However, about 4 years ago my symptoms became much worse. Two and a half years ago I moved home to live with my parents due to disabling symptoms.
Any donations will go towards health care that insurance doesn’t cover (I’m very lucky to have most of my medical care covered by Medicaid. One of my current goals is to see a functional medicine practitioner which is expensive), travel costs (I travel to Kansas City for specialists), and also just so that I can have some of my own money. I am also hoping to transition to living independently once I am able, which will require certain help and accommodations.
I am humbled to ask for help and I hope someday to be on the giving end. But today is not that day. Thank you for reading and please don’t hesitate to share!
Organizer
Whitney Churchwell
Organizer
Bird City, KS