Acute vs. Chronic: Living with Lupus
According to the National Library of Public Medicine, chronic illness is the number one health care problem in the United States. Even with that alarming statistic, for those of us suffering with these conditions, it feels as though the world has been slow to focus attention from acute conditions to chronic ones. The fact of the matter is that chronic illnesses, more often than not, require more resources, more financial assistance and more care for an individual (and those around them) to maintain any sort of quality of life. And let’s face it, once the dust settles after a diagnosis, chronic illnesses are just not as fun to talk about. Particularly those in your inner circle (i.e. family, co-workers) who may grow weary of the on-going struggle.
Understanding the differences between acute and chronic conditions may help your loved ones, friends and co-workers understand it too. And through this knowledge, hopefully spur empathy, acceptance, and more effective avenues of communication, for you and them.
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 week or two. Examples of acute illnesses are a burn, bone break, flu or urinary tract infection.
A chronic illness is a condition that usually has a gradual onset and is long-lasting (or lasting more than three months). Examples of chronic illnesses are osteoporosis, rheumatoid arthritis, kidney disease and lupus.
Besides the onset and duration of the disease, there are some other differences between acute and chronic conditions. The psychological variance and reaction of those around are important to understand as well.
Nick has come down with acute appendicitis. His friends and family have rallied around him, checked in through texts and phone calls. He had several people visit him in the hospital who also waited until he was out of surgery. Balloons and flowers were sent to his recovery room. Meals were set up for when he would be home recovering. Although his acute condition was scary and painful, Nick felt safe, loved and important that his friends and family cared so much to drop everything and be there for him.
This brings us to Sally, who has had chronic kidney disease for the last 10 years. She has dialysis 2 times a week, has had numerous surgeries, and is hospitalized often. Her friends and family have grown fatigued with having to keep up with the visits, check-in’s and rallying. At first, they came to visit her when she was in the hospital, but now the visits are few and far between. It seems like her friends follow the “out of sight, out of mind” mantra when she disappears for a month to recover from her latest procedure or infection. People’s lives go on, and Sally is stuck. “You mean, you aren’t well yet?” is the question she gets asked the most. “No. Still sick. Still fighting,” she replies. Sometimes she feels she is fighting an uphill battle, all by herself.
Why is the response different between acute (Nick’s appendicitis) and chronic (Sally’s kidney disease)? This is partly because people in general desire resolution. They want to move on with their lives as much as you do. This is when the psychological impact of a chronic illness can pierce the heart and cause a flow of unwanted emotions. For the person suffering with the illness, it can lead to feelings of loneliness, bitterness, resentment, guilt and hopelessness. For the person (or people) around the affected individual, it can lead to avoidance as a coping mechanism, frustration, impatience and resentment. Hard things on both sides.
Having experienced both sides of this, 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. Try not to sit and sulk when no one showed up to hold your hand. People are not mind-readers. Friends and family need to be reminded that there is a hand to hold. 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. You are not being punished. 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.” PER.FEC.TION.
Text number 1: My reply would be “Oh thanks, but I’m ok.” (when I’m really not, but feel bad asking for help)
Text number 2: My reply would be “Oh thanks!!! I was so worried about my puppy being home all day and about dinner tomorrow! You are a life-saver!” (this takes two things off my worry list, and I can focus more on recovery).
If I had a dime for every time someone said to me, “You’re still sick?” … I would be a zillionaire. Sadly, that’s not the way the world works and I don’t get paid everytime 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.
And the crazy this is, this is affecting the entire nation! 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.15
- 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.16
- Cancer care cost $157 billion in 2010 dollars.17
- 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.18
- 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.19
Page last updated: February 23, 2016 Content 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. 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. Back to top
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 will have. But it is important to be wise and try to put together a financial plan. Here are a few tips that I would recommend 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 usefull when you have a chronic illness. This is due to the fact that both your income flow and expenses may change if you’re unable to work or have a change in work hours. Having a grasp on your overall financial picture can also help you feel more in control and less stressed if something were to happen. 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, I know…do we really need to talk about this? 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
Acute illnesses are not fun. Chronic illnesses are not fun either, and last for much longer and have economical, financial and emotional impacts that sometimes out last the duration of the condition. 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.
And the next time someone says to you, “You mean, you aren’t well yet?” Say, “No, I’m fighting…and I’m not giving up.” Back to top
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