You're More Than Just a Number
Statistics. Numbers. Research studies. When battling inflammatory bowel disease, it's easy to feel like you're just another number. A patient, but not a person. It's an isolating condition, even when you realize how many others deal with your same experiences, worries and concerns on a daily basis. While medicine and doctors help keep us afloat and enable us to manage our conditions, it's all still a business. At the end of the day, there are commercials touting biologics and profits to be made whether it's your physician or your insurance company. There have been times throughout my patient journey where I questioned the need to see a specialist for this or that or undergo a procedure when I feel completely fine.
We all hear and talk about the need for a cure.
The desire to find better treatments, easier ways to do procedures, medications with less side effects--but there comes a time when you start to wonder if that's truly what is desired.
For example, a "pain-free" Humira injection is available in Europe. You can see photos and comments on social media all the time from people saying how incredible it is to feel nothing when giving an injection that used to feel like liquid fire flowing your leg. Here in the United States, that "pain-free" injection is yet to be approved. Supposedly, all that needs to be taken out is citrate and some additives. So what's the hold up? In the meantime, so many people are enduring excruciating pain that leads some to even tell me they have panic attacks before each injection. You would think it would be a priority for the drug company to put their patient's needs first. It's not a secret how painful these injections are. Unless you use them, you have no idea. If patients' quality of life is paramount, this should be a priority.
I often speak with some digital healthcare companies and pharmaceutical companies who reach out constantly wanting me to share my story, my experience and how I got to where I am today. So many don't offer compensation. They expect to use your words and hear your stories about your endless battles for good health for free. All to benefit their business.
Hold that patient journey of yours close and know it's worth.
You've endured difficult days, you've been given a chronic illness, you deserve to be shown how invaluable that "inside look" into your battle truly is. It's taken me nearly 13 years to realize this. It's one thing to offer your time and resources to a non-profit organization like the Crohn's and Colitis Foundation, who's main goal is research and support for those in the IBD family. It's another to share your time and your story, with nothing in return.
Always remember at the end of the day you are your own best advocate. While you may feel powerless at times, recognize that you are powerful. You have the ability to say "yes" and to say "no" if you are not comfortable with a recommendation, medication, treatment plan, etc. Stand your ground, do your own research and educate yourself. It will empower you more than you realize.
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