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Posts Tagged ‘rheumatoid arthritis’

Hey all! This post is a bit off topic. I’m writing it with the hope that it will be selected for the Rheum Blog Carnival, but
I think my regular readers will find it applicable to their lives as well.

I’ve lost count of the times that I’ve been told by friends and family “You don’t need to be on those medication! They’re bad for you. You just need to exercise and eat better.” Living in a town with very liberal roots, I also get “Why haven’t you tried this herb that they collect in a secret mountain stream? You don’t need to take poisons! Have you tried a gluten-free diet? It’ll fix everything.”

—–
To everyone who tells us to stop taking medications,

Listen guys, I know you mean well. You’re trying to help me in a way that worked for you. And I’m so glad that lifestyle changes and naturalistic medicine helped you or a loved one. But listen:I am me. You haven’t lived a day in my shoes, nor would I want you to. But please understand a few things.

1. My illness isn’t my fault. Even if I ran miles everyday and only ate home-prepared organic food, I will still be sick. I know that you’re not explicitly saying that my actions and lifestyle is to blame for my illness, but that’s how it comes out. That’s what it feels like and it hurts. It makes me lose confidence in your opinion of me. It makes me not want to be open about my needs or limitations when I feel like you’ll view my illness as something I could easily change, if only I wanted to. I do want to change my illness, I wish that it would Disapparate out of my life as if it was magic. But these meds are the only thing keeping me functioning and I can’t jeopardize that.

2. Telling me to get off of my medications is akin to damning me to a life that’s almost not worth living. The negligible benefits that may come from the natural supplements or exercise and diet could take months or even years to manifest. Being off of my “evil chemicals” for that long would harm me in a way that your advice couldn’t fix. As I said before, these medications are the only things that keep me able to live my life and I can’t jeopardize that.

3. You don’t know enough about my disease and it’s effects on me to pass judgment on how I’m treating it. You don’t know what my medications actually do, and you don’t know the health risks and side-effects of these meds that you continually put down as “over-medicating” or “dangerous chemical compounds”. Every disease is different for every person unfortunate enough to have it. Your friend with the “miracle” cure? She might have a completely different subset of the disease! One size does not fit all when it comes to treatments for chronic diseases.

4. Those of us with chronic illnesses are completely aware of the effects of our medications. We know that they can cause liver failure or vision changes or high cholesterol levels. You don’t have to tell us that these medications can be dangerous because we know it already. But we have decided that those risks are worth taking to improve our lives. It’s all about quality of life for us, and sometimes it’s a trade-off. We trade possible future complications for the ability to actually live today. But we have already decided. Please respect that decision.

5. Respect. Please try to respect us. Respect our choices, respect our limitations, and respect our knowledge. We try not to talk your ear off about our illnesses, but please try to listen to what each day is like for us. We appreciate your interest in our lives and we love that you want us to feel as amazing as we can. Your friendship and concern are intensely needed and loved. Please just try to be empathetic to our illnesses.

Sincerely,
All the people living with chronic illnesses
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Ever since I was diagnosed with bipolar II disorder five years ago I’ve been bombarded by people who, with kind hearts, would lament that I chose medication. Now that it’s likely that I have Rheumatoid Arthritis or another autoimmune connective tissue illness, I’m sure that I’ll be bombarded with the same advice even more. It’s hard for a healthy person to understand what RA or bipolar is like. I don’t expect them to. I just wish that they would understand that we focus every day on how to manage our illnesses and live our lives. That’s what we think of from sunup to sundown: how to feel a little bit better the next day or how we’re going to change our lives to fit into the cages that the disease traps us in.

-Ashes

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There was a death in the family and now I’m dealing with the possibility that I may have rheumatoid arthritis. This has obviously been hell on my bipolar, but I just haven’t had the energy or strength to talk about it. I’m hoping to get active on here again soon, but I thought that I’d let you know why I’ve been sort of absent from this blog.

As soon as I can write about relatable I’ll post.

-Ashes

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