Amber Blevins Shares Facebook Post Highlighting the Toll of Chronic Illness

If you have a chronic illness, then you likely know how draining an illness or the care a condition requires can be. Finding a diagnosis, treatment or doctor who takes you seriously can take months or even years as well as a lot of money. Amber Blevins, who has Ehlers Danlos syndrome (EDS) and other conditions, shared a before and after photo to show the effect chronic illness and problems getting proper help have had on her.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Blevins posted photos of herself one year apart. In the first, she’s smiling and dressed to go out. In the second photo, she’s lost a considerable amount of weight (which she points out in her caption) and is visibly upset. Blevins’ post has been shared over 13,000 times.

“This is what getting sick in America looks like,” Blevins posted. “Getting progressively more ill because doctors don’t want to treat ‘complex’ cases so they diagnose your symptoms as psychosomatic and give you psych meds.”

It can be difficult to find doctors who are well-versed in a condition like EDS because it’s rare. Treatment for EDS can vary based on which type you have. Treatments typically target preventing serious complications or relieving symptoms. Financial strains from chronic illness, like Blevins experiences, can make treatments inaccessible, so preventing complications or relieving symptoms isn’t always possible.

“I’ve been in bed for 4 days,” Blevins wrote. “I’m too weak to get up and do anything. I’ve gone to well over a hundred doctor appointments this year. I’m prescribed roughly 26 medications from various doctors who’d rather throw pills at me than figure out what’s actually wrong.”

Like Blevins, others with chronic illnesses have encountered doctors unwilling, or unable, to see the whole picture or realize that not everything has a simple answer. One Mighty contributor wrote a letter to the doctors who didn’t believe her pain:

I wish you listened the first time. If you had, then maybe I wouldn’t have needed to endure so many tests and procedures. Maybe it would not have taken seeing over 16 of you to reach a definitive diagnosis.

I hope you remember me. I hope you remember that just because someone’s pain does not have an easy explanation does not mean it is nonexistent. Although psychosomatic pain is real, it is not always the cause of a woman’s pain.

Sometimes finding a different doctor isn’t possible, especially if you live in a rural area or cannot afford to see a specialist. If you find that your doctor is not listening to you, here are some “comebacks” that can help you advocate for yourself.

If you are struggling to find a doctor who believes you, don’t give up. Your health is worth fighting for. Compassionate care is out there, even when it feels impossible to find.