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* 1. My gender is: 

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* 2. How old are you (in years)?

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* 3. How long have you been chronically ill (years)?

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* 4. I have been diagnosed by a physician with one or more chronic, invisible illnesses.  The one with the largest impact on my quality of life is:  (Select one)

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* 5. My other chronic invisible illnesses diagnosed by my physician are (not including your primary illness): Check all that apply

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* 6. How would you rate your quality of life?

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* 7. How satisfied are you with your health?

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* 8. Rate the following:

  Not at all A little A moderate amount Very much An extreme amount
To what extent do you feel that physical pain prevents you from doing what you need to do?
How much do you need any medical treatment to function in your daily life?
How much do you enjoy life?
To what extent do you feel your life to be meaningful?
How well are you able to concentrate?

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* 9. Rate the following:

  Not at all A little Moderately Mostly Completely
Do you have enough energy for everyday life?
Are you able to accept your bodily appearance?
How well are you able to get around?

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* 10. Rate the following:

  Very dissatisfied Dissatisfied Neither satisfied nor dissatisfied Satisfied Very satisfied
How satisfied are you with your sleep?
How satisfied are you with your ability to perform your daily living activities?
How satisfied are you with your capacity for work?
How satisfied are you with yourself?
How satisfied are you with your personal relationships?
How satisfied are you with your sex life?
How satisfied are you with the support you get from your friends?

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* 11. Rate the following:

  Never Seldom Quite Often Very Often Always
How often do you have negative feelings such as blue mood, despair, anxiety, depression?

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* 12. Answer questions based on where you are in coping with your illness right now. If you are past the beginning stages of coping with your illness, you might be less likely to agree with those statements.

  Definitely do not agree Do not agree Somewhat agree Agree Very strongly agree
I feel like I am falling apart.
I am just beginning to recognize when and how my symptoms occur.
I am beginning to accept the fact that I will never be completely like I was before the illness and that I will need to become a new person.
I now have learned that living with the illness involves getting sicker, at times, and improving, at times.

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* 13. Answer questions based on where you are in coping with your illness right now. If you are past the beginning stages of coping with your illness, you might be less likely to agree with those statements.

  Definitely do not agree Do not agree Somewhat agree Agree Very strongly agree
The primary way for me to improve is if my physician finds me the right treatment.
I am beginning to seek support and information from others who have or who know about the illness.
I am in the early process of creating meaning about my illness experience.
I have gained a sense of myself that is blended - a combination of my life before and after I first got sick.

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* 14. Answer questions based on where you are in coping with your illness right now. If you are past the beginning stages of coping with your illness, you might be less likely to agree with those statements.

  Definitely do not agree Do not agree Somewhat agree Agree Very strongly agree
I need to know with certainty when and if I am going to get better.
I am just starting to feel like I have some control of my life.
I am beginning to learn how to live with the unknown or chronic nature of my illness.
I have better and more satisfying relationships with people I care about since I first became sick.

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* 15. Answer questions based on where you are in coping with your illness right now. If you are past the beginning stages of coping with your illness, you might be less likely to agree with those statements.

  Definitely do not agree Do not agree Somewhat agree Agree Very strongly agree
It is my fault I got sick.
I am just starting to realize that there may be things I can do to help myself feel better.
I am starting to see my illness experience as having some value.
I am proud of myself for living with this illness.

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* 16. Answer questions based on where you are in coping with your illness right now. If you are past the beginning stages of coping with your illness, you might be less likely to agree with those statements.

  Definitely do not agree Do not agree Somewhat agree Agree Very strongly agree
I think about my illness all of the time.
I am just beginning to stabilize (i.e., feeling a bit less confused and a bit more ordered).
For the first time, I am beginning to have compassion and love for myself and for what I have endured.
I am a better and wiser person since I first got sick.

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* 17. Sadness

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* 18. Pessimism

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* 19. Past Failure

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* 20. Loss of Pleasure

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* 21. Guilty Feelings

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* 22. Punishment Feelings

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* 23. Self-Dislike

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* 24. Self-Criticalness

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* 25. Suicidal Thoughts or Wishes

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* 26. Crying

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* 27. Agitation

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* 28. Loss of Interest

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* 29. Indecisiveness

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* 30. Worthlessness

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* 31. Loss of Energy

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* 32. Changes in Sleeping Pattern

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* 33. Irritability

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* 34. Changes in Appetite

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* 35. Concentration Difficulty

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* 36. Tiredness or Fatigue

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* 37. Loss of interest in sex

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* 38. I await the future with hope and enthusiasm.

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* 39. I can accept defeat, give up, as I cannot make things better by myself.

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* 40. My future looks dark to me.

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* 41. Everything that I can see ahead of myself is unpleasant more than it is pleasant.

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* 42. The future looks vague and uncertain to me.

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* 43. I expect good times more than bad times.

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* 44. It’s not worth trying to get something you want, because you probably won’t get it.

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* 45. I’ve got enough time to do the things that I want to be able to do.

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* 46. In the future, I expect to achieve what may interest me.

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* 47. I expect more good things in life than people usually achieve on average.

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* 48. When I look to the future, I expect to be happier than I am now.

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* 49. When things go badly, it relieves me to know that things can’t stay like that for long.

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* 50. I can’t imagine what my life will be like in 10 years’ time.

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* 51. I can’t make things change, and there are no reasons to believe I’ll be able to in the future.

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* 52. I never get what I want, so that it’s absurd to want anything.

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* 53. It’s very improbable that I’ll be able to achieve real satisfaction in the future.

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* 54. My past experiences have prepared me well for my future.

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* 55. I don’t expect to get what I really want.

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* 56. Things don’t go as I’d like them to.

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* 57. I have great trust in the future.

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* 58. Please rate your response:

  Not at all like me Somewhat like me Like me A lot like me Very much like me
The fact that I am going to die does not affect me.
The pain involved in dying frightens me.
I am very much afraid to die.
It does not make me nervous when people talk about death.
The prospect of my own death arouses anxiety in me.
I am not disturbed by death being the end of life as I know it.
I am not at all afraid to die.

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* 59. These days, the people in my life would be better off if I were gone.

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* 60. These days, the people in my life would be happier without me.

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* 61. These days, I think I am a burden on society.

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* 62. These days, I think my death would be a relief to the people in my life.

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* 63. These days, I think the people in my life wish they could be rid of me.

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* 64. These days, I think I make things worse for the people in my life.

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* 65. These days, other people care about me.

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* 66. These days, I feel like I belong.

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* 67. These days, I rarely interact with people who care about me.

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* 68. These days, I am fortunate to have any caring and supportive friends.

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* 69. These days, I feel disconnected from other people.

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* 70. These days, I often feel like an outsider in social gatherings.

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* 71. These days, I feel that there are people I can turn to in times of need.

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* 72. These days, I am close to other people.

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* 73. These days, I have at least one satisfying interaction every day.

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* 74. Please rate your response:

  Strongly Disagree Somewhat Disagree Neither disagree or agree Somewhat Agree Strongly Agree
I often feel hopeless.
Sometimes I wish I were dead.
I am frequently lonely.
I am not looking forward to anything.
I do not cope well with my illness.
I often feel helpless.
I am looking for ways to kill myself.
I do not have a reason for living.
I am a burden to others.
I do not feel a sense of belonging in my family.
I have a plan to kill myself.
I have talked or written about death/dying/suicide.
I feel lonely, even when I am around people.
I think that others would be better off if I were dead.

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* 75. I see myself as:

  Strongly Disagree Disagree Neither disagree or agree Agree Strongly Agree
Extraverted, enthusiastic.
Critical, quarrelsome.
Dependable, self-disciplined
Anxious, easily upset.
Open to new experiences, complex.
Reserved, quiet.
Sympathetic, warm.
Disorganized, careless.
Calm, emotionally stable.
Conventional, uncreative.

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* 76. Have you ever thought about or attempted to kill yourself?  

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* 77. How often have you thought about killing yourself in the past year?

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* 78. Have you ever told someone that you were going to commit suicide, or that you might do it? 

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* 79. How likely is it that you will attempt suicide someday?

Thank you for participating in our research study! Your efforts will help us to better understand the psychological well-being of persons with chronic, invisible illness.

If these questions triggered a sense of hopelessness or increased suicidal ideation, please call the National Suicide Prevention Lifeline at 1-800-273–TALK (8255) to speak with a counselor 24/7. Another option is to text HOPELINE at 741741 with the word "start" to text with a live, trained specialist. 

Results from this survey will be published in the scientific press to raise awareness about the psychological well-being of persons with chronic illness in both the medical and scientific community. Links to the abstracts and articles from this work will be disseminated through the Standing Up to POTS website and Facebook page.

If you should have any questions about this research study, you can send them to:
Dr. Cathy Pederson at cpederson@wittenberg.edu
Dr. Jeff Brookings at jbrookings@wittenberg.edu
Dr. Katie Gorman-Ezell at gormanek@ohiodominican.edu
Wittenberg Institutional Review Board Chair Dr. Darby Hiller-Freund at hillerd@wittenberg.edu
or you may call Dr. Hiller-Freund at 937-327-7930.

Please click the “Submit” button to complete the survey. Thank you!

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