Invisible Illness Week Blog

GUEST BLOGGER: Why Your Illness Story Needs to Be Told to Change the World

Posted on September 1, 2008. Filed under: Uncategorized | Tags: Advocacy for Patients with Chronic Illness, chronic illness, Inc., invisible illness, long-term illness, politics, telling your story |

Note from editor: This is a longer post than we usually have for a guest blogger, but the information in it is important for you to know, and also to know what organizations, such as the Advocacy for Patients with Chronic Illness (who is one of our sponsors!) do to assist individual cases as well as influence laws. I know the information isn’t the most cheerful to read, but it’s something we shouldn’t bury our head from either.  Lisa

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Advocacy for Patients with Chronic Illness, Inc. provides free information, advice, and advocacy services to patients with chronic illness in areas including health and disability insurance, Social Security disability, employment and school-based accommodations, family and medical leave, resource location, and debt management. 

 

Health care is, for me, the most pressing civil rights issue of our day.  People are having to choose between food and medicine because they can’t afford both.  People are losing their jobs because they are hospitalized.  Children – children with chronic illnesses are being segregated from other students, being forced to learn at home.  If this isn’t a civil rights struggle – a battle for basic dignity and well-being – then I don’t know what is.

 

And so Advocacy for Patients is a civil rights organization, and I am engaged in a civil rights struggle on behalf of the chronically ill.  Will you join me?

 

Why is my focus on chronic illness – particularly invisible chronic illness?

 

Chronic illness is different from other illness in that it can go into remission and relapse.  For those of us who are chronically ill, we live remissions waiting for the other shoe to drop.  But because our illness can go into remission, and because we have both good days and bad days, does that mean we are not “disabled” within the meaning of the law? 

 

Disabilities law was fashioned to address the needs of people in wheelchairs, the blind, those affected by conditions that we can see.  Most chronic Illness is different.  How do you prove that you are “totally and permanently disabled” if you can work a few hours a day, or even a couple of days a week, but not more? 

 

Trying to prove that a chronic illness is a disability for legal purposes is like trying to fit a square peg into a round hole.  In order to prevail, to get our disability insurance claims paid, to get Social Security, to get the protections of the federal laws like the Americans with Disabilities Act and section 504 of the Rehabilitation Act, we have to prove that we fit a mold that was not crafted with us in mind.

 

That is the single greatest legal challenge facing the invisibly chronically ill in America today.  How do we show that our illnesses “count” when they are permanent, but not necessarily permanently incapacitating?  How many times have you heard “Well, you look good!”

 

When you read court decisions, you can’t help but be struck by how misunderstood chronic illness and the daily experience of the chronically ill are.   

• There is the judge who said that a patient with colitis had not presented evidence that she had “soiled herself,” but had, instead, vaguely stated only that she needs to be near a bathroom. 
  
• There is the judge who said a patient could not be found to be disabled because he did not have medical records for a certain period of time – while the reason he did not have medical records was that he was uninsured and could not afford to go to a doctor. 
  
• There’s the judge who said pain is not disabling because it can be eliminated if you just take enough pain medication (without considering the fact that pain medication would probably make the patient too sleepy to work).

It isn’t just courts that don’t understand chronic illness or the burdens that we face.  I hear stories from patients every day that would make your hair stand on end.   

• There’s the patient WITH INSURANCE who has multiple sclerosis, Crohn’s disease, and gastroparesis who spent more than $48,000 in 2006 on medical costs not covered by her insurance. 
  
• There’s the CPA who was demoted to secretary after being out of work during a hospitalization.  After one day in her new secretarial role, she was fired. 
  
• There’s the patient who had her colon surgically removed whose insurance will only cover a certain brand of medication that is released ONLY in the colon – the insurer won’t cover the different brand of the same medication that is released elsewhere in the digestive track.

 You think you have insurance until you run into one of these sorts of problems.  The sicker you are, the more of these roadblocks you encounter, so often the chronically ill are the only ones who are painfully aware of the limits of their insurance.  We have coverage, but not real access to health care.

 

Nearly half of all uninsureds report having a chronic health condition.  

 

1.2 million Americans with diabetes report that they are uninsured, and more than half of these report having an unmet need for health care or prescription drugs. 

 

3.6 million Americans report having arthritis-related illnesses but have no health insurance, and again, more than half of these report having an unmet need for health care or prescription drugs. 

 

More than 1.7 million Americans with heart disease are uninsured, as are 2 million adults with asthma.

 

And as one would expect, the statistics show that the chronically ill do not get the health care they need. 

 

• Nearly 38 percent of chronically ill adults indicate that they have skipped medical treatment or did not fill a prescription, as compared with 22 percent of healthy people. 
•  According to a RAND study, only 20 to 25 percent of diabetics receive critical glucose monitoring tests
• Two-thirds of patients with high blood pressure receive recommended care
• Fewer than half of patients with heart disease receive proper medication
• Fewer than half of schizophrenic patients receive appropriate medication.
• Over 27 percent of the uninsured with chronic conditions report that they have not seen a doctor in 12 months. 
• Thirty-eight percent of the chronically ill uninsured lack a usual source of care, and those who do rely less on private doctors (as opposed to clinics) than the insured.
• Almost half of the uninsured chronically ill forego needed medical care or prescription drugs. 

Despite foregoing care, the uninsured chronically ill face an average of $2,000 in out-of-pocket expenses for health care in a 12-month period.

 

In 2003, of the 3 million uninsured chronically ill, 42 percent went without needed care, 65 percent delayed care, and 71 percent failed to get needed prescription drugs, all because of cost concerns. 

 

And that’s just the status of the chronically ill as pertains to health insurance.  The chronically ill’s health status is affected by other systemic shortcomings.  We face the same hurdles in Social Security, the workplace, schools – invisible chronic illness infects every inch of our lives. 

 

I talk to chronically ill patients who are ASHAMED because they have never before been unable to work, never before been unable to pay a bill.  They hold up in their houses and we don’t hear from them because they are ASHAMED. 

 

How dare we allow this to happen?  How can we live with ourselves if we do nothing in the face of such suffering?

 

I can’t.  And I hope you can’t, either.

 

What has happened as we have begun our national discussion of the health care crisis in America is that, slowly but surely, people have started telling their stories.  If all of us talked about what we have to bear every day – how hard it is to be sick in America – maybe more people would understand why our system is failing and why we feel such urgency about finding a solution.

 

Which brings me back to my own little civil rights movement.  You have to tell your story.  Speak or you will not be heard, and if you are not heard, things will continue to worsen for the chronically ill.

 

We chronically ill have to make a little noise.

 

Fully half of all adults in the United States have a chronic illness.  We have the power to change things if we speak with one voice.  We can make it okay to talk about being sick.  We can elect people who will fix the health care mess we are in.  We can inspire each other to be engines of change. 

 

We have the power.  Now, we have to use it.

Jennifer C. Jaff, Esq. is Founder and Executive Director of Advocacy for Patients with Chronic Illness. She also has Crohn’s disease. A 1984 graduate of Georgetown University Law Center, when her disease disabled her and she turned her skills towards the internet and found a community of chronically ill patients in desperate need of legal advice and help. She started Advocacy for Patients then, when she was too ill to leave her home. Now, she serves patients full-time. She is the author of Know Your Rights: A Handbook for Patients with Chronic Illness, and Friday Tired: A Feminist Rant on Healthcare in America in the 21st Century, and she is the Chronic Illness Advocate on RevolutionHealth.com.

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