Saturday, September 5, 2009

The Bedridden & Stranded

As everyone is no doubt already fully aware, there's a lot of talk out there right now about health care reform. In my opinion, there is no question that our health care system is in dire need of change. Whether or not I think the current controversial bill has the best possible resolutions, I remain uncertain. I agree with much of it in a general sense, but I also still have a lot of questions.

However, here is something I do know with some measure of certainty: there is no health care for the bedridden. Not really. Not unless you are in a nursing home or assisted living center, where doctors are easily accessible and willing to come to your bedside. But what of the young and chronically ill who are too sick to leave their home? We are essentially left stranded.

In the "olden days," it was the norm for doctors to come calling to the sick patient, rather than the other way around. Today, for the most part, that is unheard of. While there are indeed some mobile/visiting physician networks starting to form in some areas around the country, they are few and far in-between.

I am fortunate to have found a caring naturopathic physician who is willing to come to my home. However, his services are limited. He can order blood tests, prescribe medications and make a general assessment of my condition. But he is not an internist. Nor is he a dentist, an eye doctor or a gynecologist. When a symptom or problem doesn't resolve, he can't simply refer me to a specialist to further look into the matter, because I can't actually GO to a specialist.
When this issue comes up, people often ask me "Why can't you just use a wheelchair, and get someone to take you and help out?"  They assume I'll be extra tired for a week or so, and then I'll bounce back.  But I'm afraid it's not that simple.

One of the most debilitating symptoms that comes with ME/CFS (and arguably the hallmark of the disease) is called post exertional malaise. This, generally speaking, refers to a worsening of all symptoms upon exertion. For some, depending on disability level and degree of exertion, this worsening can last for days or weeks. For others, it can last for months or even years. And for a few, the setback can be (or at least appear to be) somewhat permanent.

I have never made it to a doctor's office without my condition worsening. I don't tend to ever fully recover from the outing. And at this point, bedbound and requiring assistance with virtually all tasks of daily living, I can't afford to get any worse. Even when my doctor comes to my home for a 45 minute appointment, the interaction alone can set me back for weeks.

Last March, I made it to the dentist for a filling. It was my first outing in two years. It took me months to recover. I have more cavities that need fillings, and will soon require another outing.

I haven't seen an eye doctor since 2002. I haven't had a gynecological exam since 2005.

What are those in my situation to do? I know I am not the only one in this position. I've corresponded with several others facing the same challenges, and no doubt there are thousands more. It has been estimated that approximately 25% of those with ME/CFS are fully disabled, and many of those are bedridden or completely homebound. Given there are anywhere from 1- 4 million people afflicted with this disease, such a disability rate indicates that there is a significant number of people out there who are likely not getting appropriate health care.

And then there's the cost. I am on disability, and am thus on Medicare. However, I am fortunate to have secondary insurance through my former employer. While my insurance makes a significant difference in covering the cost of certain medications, it will not cover the cost of my doctor's visits, any lab tests he prescribes (since he is a naturopathic MD), nor any treatments considered experimental.

In the many years I have been ill, despite having and paying for insurance (both government and private), I have spent well over $100,000 on health care needs. I've wiped out my entire life savings, and for years, every penny of my yearly disability payments when to cover medical expenses. And I'm one of the fortunate ones, because I actually receive disability payments.

In all the discussions about what is wrong with medical care, I've yet to hear much said of the bedridden. Why is that? I suspect in part because we are invisible. No one knows about us except for our families and closest friends. No one sees us. And, unless we are lucky enough to be able to get online as I have been able to do of late, no one really hears us. So I'm writing this for those who are not heard. I'm writing so that, if nothing else, people know we are out there. And we need help.


  1. Very true. The thing that killed me was hearing about cases where bedbound people lost in-home Medicare services. Why? Because they'd left the house ... once. For instance, one guy had gone to somebody's funeral.

    He left the house to go to a funeral! He must be healthy enough to take care of himself all the time!

    They gave people who went to church once a week a pass, though. So much for separation of church and state. Yes, I think those people should have been allowed to attend church and continue to receive services, but so should people who aren't believers and need some other kind of social interaction.

  2. Laurel - Thank you for this post. I agree with you 100%. It also reminds me why I have to keep advocating for others with this disease who are not well enough to leave their homes. It is so important for you to keep blogging to share your story and thoughts with the world.

  3. Alyson -- thanks for your comment; you are always so sweet!

    Cinderkeys -- much agreed. I've heard stories to that affect as well. I once heard a story about a guy who was bedridden (not with CFS, but some other debilitating illness) and with some medical equipment he got from in-home Medicare service, he was well enough to get out from time to time. So Medicare canceled his coverage, which meant he could no longer use the equipment and was bedridden again. Crazy.

    Unfortunately Medicare's in-home services do not include doctor appointments, yearly exams, eye exams, screenings and the like. I think that is something that needs to change.

  4. I agree. We need to have traveling physicians, like the old-fashioned country doctor with his black bag. It filled me with joy to watch Moore's film SICKO and see that the French have worked out an effective program of doctors making house calls. We can learn lots from them!

  5. I am glad someone mentioned the French health care system. While no universal health care program is perfect, France has one of the more impressive ones.

    In addition to house calls, the doctors are paid bonuses when they refer their patients to programs to improve health. (Like sending a smoker to a smoking cessation program)

    Plus they are rated Number One in quality of overall healthcare by the WHO (World Health Organization) so they must be doing something right!