living with chronic disease… yes, it’s ok to talk about it.

30Jan15

I think I mentioned before that one of my friends down in California was diagnosed with stage 4 brain cancer in September. She is a wonderful writer, and uses blogging as part of her therapy. Anyway, one of her recent posts struck me as brilliant for living with chronic disease:

June’s Post About The Rabbit Hole

She is finished with her first round of chemo, and her tumor appears to be receding. But conversations with loved ones have been challenging, since some think that this means she is “cured” since she looks OK. Unfortunately, until a cure comes around, cancer is something the patient will always have to live with…

And the same goes for MS. Most days (almost every day!) I look great. No one can tell that I have MS. Some people think that I don’t have it anymore (until you look at my brain MRI); others just don’t want to talk about it.

Despite the fact that I look OK… I still have a chronic disease. And you know what? I’m totally fine with talking about it. No, there is no cure, currently (we can always hope–both for MS and brain cancer!) but I’m living a pretty good life. The number of people who shy away from talking about MS with me (a physiologist and a health educator)… no, it’s not a taboo topic!

So, let me know what you’d like to hear about… (or, chat with me in person!)

Advertisements


3 Responses to “living with chronic disease… yes, it’s ok to talk about it.”

  1. Agree with you completely. I also have MS and have no problem sharing my story in hopes to offer assurance to others dealing with the illness, and a bit of understanding for anyone else 🙂

    • Yeah, I’ve been *thisclose* to sharing my story with my college health classes… but telling a room full of 40 people still wigs me out.

  2. I have never been a shrinking violet and that’s not starting now that I have been diagnosed with RR MS either! I have shared with my family members and some close friends. I also recently share with some co-workers. The range of reactions is impressive. I have one family member brush it off saying, “well your fine now so I’m not worried about it” to another having a real live panic attack with full on hysteria. That was awful.

    My mother and father both have Stage IV cancer (melanoma and cancer of an unknown origin). I have watched how one parent has let it consumer them and truly eat them alive, while another has embraced the support of others and slowly but surely allowed her outlook to be more positive as she started to take control of her health.

    And you know which one is doing incredibly well? No surprise here. My mom was given less than 12 months to live over 2 years ago! Her scans show the metastatic cancer everywhere but it’s just hanging out. She is not receiving any treatment. There are no other options other than clinical trials and she is so healthy otherwise her Doctors are not recommending them. Isn’t that wild?

    I wish you and your friend continued success. The mind body connection is a very powerful thing.

    I look forward to following along!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s


%d bloggers like this: