“Are you well yet?" asks the entire world.
"No." replies every person living with a chronic illness.
The National Library of Public Medicine has listed "chronic illness" as the number one health care problem in the United States. This is a shocking report considering the lack of public education associated with chronic conditions, like lupus, rheumatoid arthritis, scleroderma, and mixed connective tissue disease (just to name a few). How is it possible that there is so little understanding in the general community regarding the differences between acute and chronic conditions, when chronic conditions are practically an epidemic in America?
One would assume the reason people become more invested in acute illnesses and less invested in delving into understanding and accepting chronic illnesses is because, (let's just call a spade a spade here) they are draining. Chronic illnesses are emotionally draining, physically draining, and financially draining - compared to a temporary or "acute" medical set-back.
Living with a chronic illness can be quite the conundrum. For the patient and also for the patients support system. And with any conundrum the answer to the riddle can only be found by starting with the facts, laying a foundation of evidence, and supportive information.
This is what this blog in intended to do, to inform, spur empathy, acceptance, and hopefully, more effective avenues of communication for you and your loved ones, co-workers, and beyond.
What are the Differences Between Acute and Chronic Illnesses?
An acute illness is a condition that comes on suddenly and has a short duration usually lasting a few days or a few weeks. Examples of acute illnesses include viruses, bone breaks, passing a kidney stone, and urinary tract infections.
A chronic illness is a condition that usually has a gradual onset, however is long-lasting (or lasting more than three months). Examples of chronic illnesses include lupus, rheumatoid arthritis, kidney disease, endometriosis, diabetes, Crohn's Disease, and genetic disorders.
The psychological differences between chronic and acute illnesses are important to understand as well. For example, I have lived with systemic lupus and multiple lupus overlap conditions for 29 years. It has been a marathon of constant hurdles with few times of quiescence and very little resolve. I have dealt with years of hospitalizations, surgeries, infusions, medication mishaps, ER visits, etc.
Now imagine hypothetically, if I didn't have have lupus, but suddenly came down with acute appendicitis. Think about what might happen: I would assume my family and friends would rally around me, check in through texts, and phone calls. I might have several visitors during my hospital stay, along with a possible bouquet or balloons sent to my room to cheer me up. My loved ones may even set up a meal train for me when I get home, to make for an easier recovery. Though the appendicitis was scary and painful, it has now passed, and I feel very loved knowing my friends and family cared so much to drop everything and be there for me.
Living with a chronic illness like lupus, doesn't always elicit the same response. Family and friends can grow weary of trying to keep up with the visits, check-in’s, and routine rallying. They might not tell you this with words, but rather in their actions (or lack thereof). For instance, when I was first hospitalized at the age of twelve, I had many visitors, special cards sent, and numerous check-ins. But, the second, third, forth, fifth long stay hospitalizations...the visits lessened significantly (well besides my rockstar mom of course).
Why is the response so different between the "hypothetical" acute appendicitis and the chronic lupus? Let me bequeath to you my theory. I believe the difference lies in our inherent desire for resolution. They love you and want you well, and they want to see this illness come to pass. You wish you could move on too, but you can't. You are stuck in a chronic conundrum. When there is no resolution, it can lead your loved ones down a path of avoidance, frustration, impatience and resentment. No resolution can also lead you to feel loneliness, bitterness, resentment, guilt and hopelessness. Hard things on both sides.
If I had a dime for every time someone said to me, “You’re still not well?” … I would be a zillionaire. Sadly, that’s not the way the world works and I don’t get paid every time someone says that to me. It’s actually quite the opposite, the economical impact of a chronic illness can be just as crippling as the symptoms it causes.
The costs of chronic diseases in our country is insane! Below is an excerpt from the CDC Chronic disease overview:
The Cost of Chronic Diseases and Health Risk Behaviors:
Eighty-six percent of all health care spending in 2010 was for people with one or more chronic medical conditions.
The total costs of heart disease and stroke in 2010 were estimated to be $315.4 billion. Of this amount, $193.4 billion was for direct medical costs, not including costs of nursing home care.
Cancer care cost was $157 billion in 2010.
The total estimated cost of diagnosed diabetes in 2012 was $245 billion, including $176 billion in direct medical costs and $69 billion in decreased productivity. Decreased productivity includes costs associated with people being absent from work, being less productive while at work, or not being able to work at all because of diabetes.
The total cost of arthritis and related conditions was about $128 billion in 2003. Of this amount, nearly $81 billion was for direct medical costs and $47 billion was for indirect costs associated with lost earnings. Source: National Center for Chronic Disease Prevention and Health Promotion
Now it is one thing to have to pay for an ER visit after fracturing your foot, but it is another thing to have to pay for 7 ER visits when you have epilepsy, diabetes or COPD. I have had 4 lupus related ER visits this year alone.
Acute conditions can be costly, but the overall financial toll that having a chronic illness can take on you and your household can be devastating.
What Can You Do?
Every person with chronic health issues has a unique set of needs and it is impossible to say exactly how much of a financial burden your illness may have. But it is important to be wise and try to put together a financial plan. Here are a few tips if you are struggling with with the financial effect of a chronic illness.
1) Create a budget
A budget is useful for anyone, but it’s especially useful when you have a chronic illness. Having a grasp on your overall financial picture can also help you feel more in control and less stressed if something were to happen health wise. Create a list of instructions for others (close family or friend) that includes where to find important household and financial information in case of an emergency. TIP: Set up automatic bill pay or online banking so your bills are paid on time even if you are in the hospital.
2) Review your insurance
Reviewing your insurance coverage is essential. Read your health insurance policy, and make sure you understand your co-payments, deductibles, coverage details. In addition, find out if you have any disability coverage. If you already have life insurance, find out if your policy includes accelerated (living) benefits and the details about your beneficiary.
3) Estate planning and advance directive
I know most of you are thinking, “But, I’m not dead!” Actually, estate planning is something you can do to manage your finances now. Setting up a power of attorney, living trust, and advance directive are all important and powerful tools to have in place in the chance you are unable to handle financial and medical decisions.
Note: these principles are based on The American Institute of CPA’s Guide to Financial planning. For more information on these tips, click here: http://www.360financialliteracy.org/Topics/In-Crisis/Medical-Crises-and-Illness/Financial-Planning-When-You-Have-a-Chronic-Illness Back to top
How To Improve Communication With Your Loved Ones:
I have discovered a few things that are helpful for the patient and the caregiver. If you are a person suffering with a chronic illness, i.e. lupus, here is a tip to help communicate with your inner circle in a time of need.
When you have been hospitalized, are having an important doctor’s visit, or having treatment – LET SOMEONE KNOW. People are not mind-readers. Friends and family need to be reminded that there is a hand that wants to be held. And on the flip side, don’t feel like you “deserve” to be alone in this because you don’t want to burden someone else. Sending a quick text to someone important will save your spirit! People’s prayers, well wishes, and visits are incredibly uplifting, even when you had to remind them about whatever is going on.
For the caregiver, friend or advocate: don’t ask…tell. What I mean by that is, when someone has been suffering for a while, they feel guilty asking for help. They feel bad interrupting your life because they have probably interrupted it before. Instead of sending a text saying, “Hey, heard you’re in the hospital…let me know if you need anything…TTYL…” say “Hey, I know you’re not feeling well, so I asked your hubby if I could swing by and take your dog out. I also put a frozen lasagna in your fridge for when you come home tomorrow.”
On a personal note, I want to make sure that I point out the incredibly supportive people I have in my "tribe." I know it is not easy keeping up with this "Chrondashian" but you do the best with what I give you, since I tend to keep things close to my chest. My mom, my extended family, church family, my close friends, and lupus community... you are the best.
Understanding the multiple layers of how a chronic illness can impact a persons life can be a challenge. The best advice is to be wise with medical decisions, financial planning and to be patient with your friends and loved ones who are navigating this condition with you.
Additionally, if you ever find yourself in a situation where you recover from a health scare, don't forget about us in the chronic illness community. Here is something that may help:
Sources: ncbi.nlm.nih.gov/pubmed, apa.org/helpcenter/chronic-illness, diffen.com/difference/Acute_vs_Chronic, chronicdiseaseimpact.com, cdc.gov/chronicdisease/overview, 360financialliteracy.org/Topics/In-Crisis/Medical-Crises-and-Illness/Financial-Planning-When-You-Have-a-Chronic-Illness
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright 2019, More Than Lupus.