Chronic Life

Survey for "Living with Chronic Illness"

This survey should take just a few minutes. I am writing for Marcinson Press about living with chronic diseases and conditions. We hope that your answers will help readers understand what you are going through and how to help. By agreeing to participate in the survey, you're agreeing to have your answers made public as part of the survey's collective response. Please remember that you always have the option to simply not answer questions that you find uncomfortable. You'll have an opportunity at the end of the survey to add (at length) anything else you'd like to share.

I'm going to ask you to give me your name. If you'd rather not disclose who you are and I want to use your answers, I'll make up a name for you. Obviously, you can do that for yourself, too.

Thank you for sharing your experiences. If you'd like to contact me for more information or to share something even more specific or detailed, please write me at jean.bolduc@gmail.com

Jean Bolduc

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* 1. What is your chronic medical condition? Check all that apply.

Diabetes

Rheumatoid Arthritis

Chronic Fatigue

Fybromyalgia

Lupus

Other

Other (please specify)

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* 2. Please provide your age, gender and location in the world.

Under 25

25 - 35

36 - 50

Over 50

Female

Male

Trans

Where in the world (what country) do you live? If in the United States, what state?

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* 3. How many medicines are you taking for your condition(s)?

None right now (lucky you!)

1-3

4-6

more than 6

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* 4. How many doctors do you see to manage your condition?

One - my primary care physician

1-3 including my primary and one or two specialists

more than three. It's complicated.

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* 5. Tell us about your care team. Please check all that apply.

I understand and agree with my diagnosis and treatment plan.

My doctors explain test results and new drugs well so that I understand the goals of my treatment (ex: reducing pain, getting better sleep, having better mobility)

My doctor and I work together as a team.

I have the final say on whether or not I start a new drug or make a significant change in my treatment plan.

I contact my doctor(s) through their secure online with questions I have either prior to or following up from a visit.

The only way I can communicate with my doctor(s) is through an office visit, for which I may have to wait a significant time.

When I visit my doctors (primary or specialists), I'm satisfied when I leave.

I have fired a doctor (stopped going and sought care with another physician in that medical specialty) because (s)he had a bad attitude or seemed incompetent.

Please explain further if you'd like

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* 6. Now I want to ask about how your family relationships have been affected by your illness. Please check all that apply and add more comments at the end if I've missed anything.

My family is sensational. I couldn't get through this without them.

Some days I shake my head in disbelief, but generally they're pretty helpful.

Dealing with them is almost as bad as the illness itself.

My relatives act like I'm a hypochondriac just because they can't SEE what hurts. They make me feel terrible about myself.

I wish I knew how to point them in a positive direction with specific things they could do to help me.

My partner and I struggle with physical intimacy.

My spouse and kids are fine, but my extended family just doesn't understand.

Can you provide an example of how your family handles your illness (good or bad)?

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* 7. Do family members give you unsolicited advice about managing your condition?

No, they're supportive about my treatment plan.

Yes, they often direct me to fad diets and unproven alternative medicines

Yes and they are insulted if I don't report back that I tried whatever they told me about

Yes, and this causes a lot of tension and conflict

Yes, but they mean well. It's not a big deal.

What do you say or do that works the best to shut down unwanted advice from relatives (well-meaning or not)?

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* 8. If you are employed, what are the issues at work that you find challenging (related to your illness)? Please check all that apply.

Unsympathic co-workers/boss

Not enough paid sick leave

I feel I need to hide my symptoms if I'm having a bad day (feeling ill).

Inflexible schedule

People who come to work with colds/flu, putting me at higher risk of getting very sick.

Other (please specify)

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* 9. If you'd like to share your real name with us, now's the time! If not, just say "no, thanks" and we'll choose a superhero name for you if your story is featured in the book. If you do share your name (telephone or email), please also include contact information so we can verify that you are really YOU!

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* 10. Thanks for participating in this survey! Now, here's your chance ... please tell us anything else that you think we should know about your experience in living with chronic illness or a question you would like to ask. If you'd like to work on a longer response and submit it separately, please email me at jean.bolduc@gmail.com. Thanks again!