Monday, February 20, 2017

The Successful Patient: What's it like to have a Chronic Illness?

We've all had the experience of acute illness -- a cold, the flu, food poisoning, or infection. These illnesses are short lived.  While there is no cure for the common cold, we know that our bodies have effective methods for stopping the virus in its tracks. It usually takes about a week, but then we're fine.

A chronic illness is an illness that will not go away. It has no cure. Modern medicine often hasn't a clue at what the cause is. In fact, in many chronic illnesses, the body and its immune system are the culprits. These are the autoimmune diseases and I've written about autoimmunity before. Treatments usually involve managing symptoms, or trying to stop a disease process to make the disease inactive (remission). But even if the chronic disease is inactive, it has not been cured and will return if treatment is stopped.

What's it like to have a chronic illness? In my personal experience, I've found that most people haven't a clue what it's like and so they make wrong assumptions, say inappropriate things, and ask irrelevant questions. Using myself as an example, I'd like to provide a glimpse into the life of someone with a chronic illness.

Daily Life

I wake in the morning and my first thoughts focus on how I'm feeling. When I stand, am I stiff? Do I have pain? Do I have nausea? Are any joints swollen? How's my balance?  I have a routine now that I follow to get into the day that includes some stretching to help alleviate the stiffness, moisturizing my mouth and eyes against the dryness, and taking my scheduled medications. It's important that I eat well during the day, i.e. no junk, no sugar, and follow my diet to insure that it remains quiet. It's also important that I eat by certain times due to my medication schedule.  I have a medication that must be taken on an empty stomach twice a day. The morning is no problem, but the evening can be. In the morning, I also have a schedule for the different meds before and after breakfast. By taking my medications correctly, I increase my success at managing symptoms and being able to go through my day well.

What happens when one of the diseases flares up? Well, I just had that happen with my Interstitial Lung Disease (ILD) which was triggered by a new medication. When the ILD flares, I can be quite ill and it's best if I stay home and take care of myself. When the psoriatic arthritis flares, I'm in extreme pain from the affected joints. Sometimes pain meds will stop that pain or at least dull it, but sometimes they have no effect. It's really hard to walk when the joints in my feet are inflamed. It's been years since I've had a flare of the Sjogren's, and I'm thankful for that. It can affect my inner ear and balance, my swallowing, and can give me a mighty sinus headache as well as swell my salivary glands. Not fun. People see the swollen glands but otherwise, the only chronic illness I have that people actually see is when my psoriasis flares which is a prominent, red, pustular skin rash on my scalp, along the hair line, on my arms, back, legs, palms and feet. I've written about dealing with the fatigue that goes with autoimmune diseases here and here.

So I have chronic illnesses but rarely are visibly sick. I've heard comments such as "You don't look sick" or "You're faking it -- you look fine." Doctors and nurses have told me that they can tell when someone is faking it in a variety of ways, especially in the person's behavior. The average person doesn't have that expertise. What I usually do in that situation is to explain the disease that is flaring, why I look "fine," and why I'm not fine. Most people with chronic illnesses are not visibly sick. Please don't assume that if someone doesn't look sick that they aren't.

At work, I must pace myself in order to conserve energy. I take with me whatever I need to help me deal with symptoms that could interfere with my job. This includes nasal spray, eye drops, throat lozenges, my inhaler, and OTC meds that help me digest food. I do not talk about my chronic illnesses at work, unless I'm out sick with one. Very few of my co-workers know about them. And as long as I take care of myself, there's no reason to bring them up. As long as I take care of myself, I'm rarely out sick.



Doctors and Medications

I have a medical team not just my primary physician. In order to stay ahead of my diseases, I see my doctors usually every 3-4 months when my diseases are active, and every 6 months when they are not. Most of my medications are taken orally, but I do take two that are administered by infusion in a doctor's office, and one by intramuscular injection that I do myself.  My infusion appointments occur every 8 weeks and every 12 weeks.  If I'm lucky in scheduling, they are both due at the same time, but usually they're not.

It's important to be committed to keeping medical appointments and to take medications according to instructions. Deviating from this can cause diseases to flare or other problems.  I know that I do as well as I do because I keep my medical appointments and take my meds.

In an effort to have some control over my body and health, I also have tried alternative therapies. Often with my doctors' encouragement. I've tried Reiki, massage therapy, Tai Chi, Falun gong, meditation, and different kinds of physical exercise. I've also attended support groups for people with the same diseases I have where discussion topics have included alternative therapies, diet, holistic approaches, and chiropractic medicine. I've found Reiki, Falun gong, meditation, and physical exercise the most helpful to me.  I've also developed my own diet of safe food that doesn't cause a flares. 

Medical Insurance Companies

Medical insurance is a business, and people who work for insurance companies are tasked with saving the company money, not paying it out. So medical insurance companies do not like people with chronic illnesses because they submit the most claims and cost the insurance company the most money. So insurance companies will play a passive-aggressive game of stalling and using bureaucratic language that confuses rather than clarifies. Medical insurance companies are not your friend, especially if you have a chronic illness. Don't believe any of the niceties they include in their correspondence or brochures, their advertising or through customer service. When they claim to be looking out for the patient and the patient's health, that means that they are looking out for themselves and their bottom line, not the patient. Everything they do is to save money for them.



In my experience both pre- and post-ACA, dealing with insurance companies has exacerbated my symptoms and hurt my mental health. It's important to stay as positive as possible when you have a chronic illness, and there's nothing in the way insurance companies treat their customers that is helpful to staying positive. They claim that they are not practicing medicine, and yet they also claim in their written materials and on their website to be actively determining if a treatment or medication will be effective for a patient, even after the patient's licensed physician has already made that determination. It's all about money, folks. It has nothing to do with the welfare of the patient, but how much the patient will cost them.

For someone with a chronic illness, it can be almost a fulltime job to deal with medical insurance companies. On top of everything else, of course. Our current system definitely needs reform. The ACA was a solid beginning, but what the Republicans are proposing now would set patients and doctors back 20 years to a time when medical insurance companies had complete control and power, especially over whom they will insure and how much they'll charge.

Chronic illness is expensive. If I did not have medical insurance, I would be dead because I could not pay for all the medications, the hospitalizations, the clinic and doctor visits out of pocket.  No one can.

Depression

Depression is a side effect of chronic illness, and can be serious.  It is unbelievably difficult to live with pain, with extreme symptoms, day in and day out. More often than not, doctors run out of treatment options or insurance companies refuse to cover the treatments doctors have prescribed. The anger and frustration a patient feels about all these things needs to be expressed not internalized. Anxiety about the future is also a common occurrence with the chronically ill.

Depression has its own set of symptoms that need to be treated. I took an anti-depressant for years for anxiety as well as went through talk therapy. I'm no longer doing either. But that doesn't mean that the depression and anxiety cannot recur. People who live with chronic illness, whether one or multiple, are incredibly strong but they still need emotional and psychological support from family and friends when they're not feeling well.

Finally

No one wants to be sick. I know of no one who enjoys having a chronic illness. And the thing is, chronic illness occurs whether or not a patient has been healthy all her life, takes care of herself, or not. The patient has no control over whether or not the chronic illness hits her. A great deal of medical research is going on right now looking at the genetic component of chronic illness, figuring out each disease's process within the body in order to develop new treatments and maybe even to find a cure. Until then, I and all the millions of people with chronic illness in this country power on, doing everything we can to take care of ourselves, and ignoring the people who are ignorant, insensitive, and boorish toward us.


May you never, ever have to deal with a chronic illness.


 

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