Living Well with Chronic Illnesses

As you may know, I began blogging in September 2009 for National Invisible Illness Awareness Week.  This is an annual national project to bring awareness to the millions of Americans who live with invisible illnesses day in and day out.  This past year, event founder, organizer, and year-round activist Lisa Copen took a new direction, and made it a week about reaching out to those who are not just invisible but also silent; those who may not have known all the resources and support available to them.  (Read more about Lisa, her organization Rest Ministries, and IIAW news here.)

As part of her efforts to draw people - patients as well as the public at large - to her site and this life-changing cause, Lisa reached out to some of her friends and compiled an eBook with with tips for people with chronic/invisible illnesses from 20 'experts'!  (I put experts in quotes because she included me and I'm not sure what I'm an expert on...)  The book was available as a free down load to people when they signed up for daily emails about the event.

In the past few months I've made a lot of new friends online, and with the photography project with Villanova, traffic to my blog has hit an all-time high!  So, I thought it would be a good idea to actually post something useful for all my new readers:)  Once in a while, I have to actually write something useful, right?  So, here are the 9 tips I contributed to Lisa's eBook in September 2010.  If you want to read the other 254 tips, you'll have to go to Lisa's site (linked above) to learn more:)

9 Tips for Living YOUR Life with a Chronic Illness:

1. Redefine what “control” means to you. To me, ‘control’ meant I would decide what I would do and when I would do it – and my disease would have nothing to say about it. Ultimately, I realized that ignoring my special needs was giving control over to my conditions, because I would eventually push myself into a flare. Now I’ve regained ‘control’ by doing the things that keep me functioning – such as using sunscreen or wearing gloves even for quick trips outside – so I can do the things I want.

2. “Do what you can, while you can, so you can continue.” I can’t run, do jumping jacks, or take a step class – but (on a good day) I can walk, bike, or do yoga. Some people have misunderstood my exercise on one day to mean I’m ‘faking’ illness on other days, so I try to explain that by walking on days I can handle it, I’m improving my joints so I can continue walking in days to come. Find what abilities you still have and be sure to use them in ways that improve your prognosis in the long run!

3. Check out teaching hospitals when looking for a specialist. Hospitals affiliated with educational institutions often have doctors versed in the most recent developments, those who have a special interest in specific conditions, and those who are most likely to have an open mind to information you may provide. While not a guarantee, a teaching hospital can be a great resource for finding a doctor who will work with you.

4. Insist that doctors explain treatments to you (including prescriptions) until you understand it. If you can’t answer your friend’s question about how a drug or treatment will help your condition, you shouldn’t be taking or doing it! Asking your doctor isn’t enough if you don’t understand the answer, so insist that your doctor keeps explaining it and uses language you can understand until you are comfortable with the decision.

5. When asking for accommodations, try to suggest another way you can contribute. I had to ask for an accommodation at work to reduce my out-of-town travel and felt nervous how this might impact my job. So, I made sure to mention other ways I can still contribute something special, such as working on recruitment projects or with our “disability network.” These suggestions will show people that you are not looking for an easy out but rather are trying to do the best job you can with your unique needs, and make the changes feel more like collaboration than accommodations.

6. Request copies of all test results (such as blood labs, x-rays, MRI / CT scans, etc.). We all know how stressful it can be to change doctors, or how hard it can be to coordinate treatment among multiple doctors. Having a copy of things such as recent tests will make this process much easier. And remember, your health records are yours by law and you have a right to these copies (though you may have to make a reasonable advance request).

7. Ask your specialist what you should do if you have an urgent question between appointments. Many chronic conditions are not considered urgent care issues (no matter how pressing symptoms may feel to us at times), and so many specialists are unavailable outside of business hours or may lack the ability to accommodate a last-minute appointment. Ask your doctor during one of your appointments how you can contact them with a question between appointments. Many doctors now have email accounts from their affiliated hospital and will readily provide them to you.

8. Learn your family medical history. Research your family’s medical history (specific conditions people had, how you are related, and relevant details), then organize and interpret the information to see how genetic traits could impact you or your children. Chronic illnesses often belong to “families” of related conditions and knowing what is in your bloodline and how it manifested could save a lot of time in getting a diagnosis and effective treatment. Remember to share the information with your family!

9. Have no regrets – on your terms. You know how quickly your life can change – don’t waste a moment of it regretting something you did in the past. If you take the care to be as educated as possible and identify your priorities/passions, even decisions that had unpleasant outcomes will have served a purpose.