Saturday, October 19, 2013

You Owe It to Yourself

Learning to live well with chronic illness is not easy. Each time I think I have it figured out, the landscape changes and I'm scrambling yet again. Chronic illness can hit us hard emotionally. We can't do the things we used to do, we feel like a burden, people keep trying to "fix" us, we try to fix ourselves. The very conundrum of chronic illness means learning to accept that it's not going away.

BUT, that doesn't mean that we can't live full lives!

It just means that we need to get creative, and respect ourselves enough to honor our body's needs at any given time. Just because our bodies are broken, doesn't mean we don't have value, and that we can't contribute.

Connecting with Others

To think that we can navigate this strange new landscape by ourselves is unwise. It's far too easy to get lost in the opinions of others. People can't possibly understand how we are feeling, unless they are living with the same illness. Even then, we all respond a bit differently because we are all different people! It's also far too easy to get lost in our pain and misery. Don't do this alone; you do have options.

Local Support Groups and Agencies

If you live in a major city centre, chances are you can find some terrific programs right in your own community. Check out community centres, government agencies, support groups, church groups - the list can go on and on. While some of these groups will have programs at a cost, many are free. If you are mobile, this is a great route to go.

Social Media

There are people out there who use social media solely to steal your information and even your identity. There are also many dedicated people and organizations that truly want to help others. Using social media wisely  means not baring your soul and private details to the world. Can you imagine sharing intimate details of your life with someone you just met at the grocery store? Certainly not! The same care needs to be taken online. 

Buyer Beware

  • Treatment Options
Search out health information from health care providers or non-profit organizations related to your illness. There are far too many people who want to prey on the chronically ill for their own personal gain. Be wary of people who promise they can cure you. What worked for them, may not work for you. Not only that, their products may not be safe!
Lesson learned: Don't sign up for anything or start any treatment plan without researching it thoroughly.

  • Product safety
I can't stress enough just how important it is to do your homework before taking any supplement or "natural" product. I started taking a supplement a few weeks ago through a company I discovered online. I researched the company and felt confident that they were reputable. I then discovered this supplement was putting me at risk for Serotonin Syndrome - a potentially life-threatening condition! This wasn't the company's fault; I didn't research the product thoroughly enough to see how it would interact with my medications.
Lesson learned: Bring a print-out of the product label to your doctor and review it with him/her before buying.
  • Keep personal information personal
I am astounded at how much personal information people share online. Having said that, you can't fully participate in an online support group without talking about your struggles and the impact they are having on your life. This is where you need to tread slowly and carefully. Check their privacy policy. What mechanisms do they have in place to protect your safety and information?
Lesson learned: Research support groups carefully. Don't share details that could compromise your identity. Be careful, be safe!
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Bottom line - yes you do have to be careful, but don't let that stop you from reaching out to others. Who knows, you just might be inspired to start your own group.