For anyone suffering from chronic pain, you know what it’s like. If you haven’t had that luxury, here’s what it feels like:
You feel like Frankenstein.
Your friends and family think you’re a drama queen.
You feel like you’re stuck in a medieval torture chamber.
Walking feels like dragging 20-pound concrete blocks.
Someone is stabbing you in the back—but it’s not your coworker.
Quick! Call the fire brigade cuz your joints are on fire!
And to that point, for more than 16 years, a brave woman named Isobel C. lived with chronic pain and arthritis associated with a rare disease called Muckle-Wells Syndrome. You think you’ve got problems?
Here’s what she’s had to endure as documented on the Rare Connect website for people living with chronic disease like Muckle-Wells Syndrome:
- Being bullied by supposed friends
- Doctors who didn’t take her seriously
- Doctors who thought she was just “jonesing for painkillers” when all she wanted was to be pain-free
- A non-itchy rash
- Incredibly stiff and painful joints
- Feelings of loneliness and hopelessness
Fortunately for Isobel, her doctor prescribed Kineret injections, to treat her rheumatoid arthritis and associated pain. Although it’s not a treatment for Muckle-Wells, at least her suffering has eased which has made a huge difference in her life!
She recently blogged that she feels “none of the pain” that she suffered from for years, which is fantastic!
So what if she’s gained some weight—it’s a side effect that can be managed, right? But what I’d like to know is: Why is Isobel so nice?!
Why aren’t Muckle-Wells patients bi***ing more—screaming to pharmaceutical companies for a treatment that works?! You deserve an effective treatment with tolerable side effects to slow the progression of the disease. You deserve to listen to music, to hear your lover’s voice. You deserve to be pain-free and fever-free! It’s your right. Never forget that.
Whatever you do, don’t quit your b****in!
So readers, now it’s time to hear from you! Do you think that getting angry and speaking out motivates pharmaceutical companies to develop new drugs? Or do you think it’s all about the money? Why should pharmaceutical companies make treatments for rare diseases if they don’t get their money back?
Leave a comment below to share your side of the issue.