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Thank you! Panel Discussion: The Cost of Having an Invisible Illness

 

Important Note:

According to a 2017 RAND study, as of 2014, 60 percent of Americans had at least one chronic condition, and 42 percent had multiple chronic conditions. These proportions have held steady since 2008. 

 As used in the RAND study, it includes any physical or mental health condition that lasts more than one year and either limits ability or requires ongoing treatment. That means high cholesterol and high blood pressure, anxiety and arthritis, heart disease and diabetes.

RAND researchers used data from a national survey on health care expenditures to compile a chartbook with the most up-to-date numbers on the cost and prevalence of such chronic conditions. Their estimates suggest that nearly 150 million Americans are living with at least one chronic condition; around 100 million of them have more than one. And nearly 30 million are living, day in and day out, with five chronic conditions or more.

Those at the highest end of the scale, with five or more conditions, represent about 12 percent of the U.S. adult population, but account for more than 40 percent of U.S. health spending, the RAND study showed.

 

1. Financial Cost:
   1. Repeated trips to the doctor each with its own co-pay.
   2. Seeing specialists, which in addition to copays, sometimes require travel to other parts of your state or even other states. 
   3. Tests after tests.
   4. Experimental procedures, not usually covered by insurance
   5. Second opinions
   6. Cost of prescriptions, even with insurance can be excessive. 
   7. Cost of medical supplies, over-the-counter meds, and medical equipment.
   8. Cost of special foods (I can speak from experience that trying to find foods that are dairy-free or buying dairy-free replacements are much more expensive.)
   9. Taking a lot of time off work for all of these doctor appointments.
   10. Loss of income if you cannot work / cannot keep a job.
   11. Cost of alternative treatments (like acupuncture, reflexology, chiropractic care because you are desperate to find something that helps with pain) that are typically not covered by regular health insurance.
   12. Therapy for self and family
   13. Cost of more expensive everything dyson v7, cars that fit wheelchairs, wheelchairs and canes, help, ready made meals, beds that adjust, disability lawyers,
2. Physical Cost:
   1. Harder time accessing help because people don’t believe you need it.
   2. Not “officially” disabled, so unable to use assistive devices everywhere. (Disneyland and my walkstool)
   3. Limited job prospects (many employers don’t like to make accomodations for things that they cannot see.)
   4. Overdoing it because you are trying to hide your disability / trying to live a normal life for just a few hours and thus paying for it for days afterwards
   5. Harder time doing simple tasks that you feel you should be taking care of (cleaning house, cooking, etc)
   6. Lost time to getting and sorting meds every week, researching treatments, being your own advocate with medical system (How many hours have you spent on the phone talking with medical professionals, Monica?)
   7.  
3. Emotional Cost:
   1. Conscious / unconscious need to act like nothing wrong, even on bad days.
   2. Embarrassment at asking for help or for special accommodations since your illness is not visible especially if they fear it affecting their job.
   3. Having to explain your illness to strangers because they don’t believe anything is wrong with you / think you are faking it.
   4. Strain on relationships when others have to do more because you cannot.
   5. Self loathing from needing someone to take care of you
   6. Being self-conscious because experience has taught you that people don’t believe you when you say you have an illness
   7. Isolation and loneliness from being home all day while friends and family are at work. 
   8. Missed moments with family and friends because you aren’t well enough to be there. (Look at how many times we’ve tried to arrange a trip to wine country or how many times Scott and David have gone out without me because I was sick and couldn’t go.
   9. Depression 

Links:

 

1. https://www.rand.org/blog/rand-review/2017/07/chronic-conditions-in-america-price-and-prevalence.html
2. https://themighty.com/2016/12/cost-expenses-having-chronic-disease/
3. https://www.pinterest.com/pin/295267319303446311/
4. http://www.mydiabeticheart.com/2017/05/16/the-costs-of-a-chronic-illness/
5. https://www.sciencedaily.com/releases/2012/09/120911091100.htm
6. http://thehill.com/opinion/healthcare/352032-fibromyalgia-an-invisible-disease-with-a-devastating-toll
7. https://www.psychologytoday.com/us/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness
8. POV about costs from a woman in England: https://www.youtube.com/watch?v=qhnZVjEQKSM

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