15 Things I Wish Everyone Knew About Living with a Chronic Illness

A chronic illness lasts longer than 3 months. It is a health condition or disease that is persistent in its effects or it comes with time. Chronic illnesses may never go away and can disrupt your life. There are disease specific symptoms as well as invisible symptoms like pain or fatigue. Physical changes can make you have low self-esteem leading to withdrawing from friends and family.

Having a chronic illness means you have to adjust to the illness and therapies used for treating it. Chronic illnesses don’t fix themselves and can’t ever be completely cured. Most chronic illnesses come in more than one, meaning if you have one then you often have others. Adding multiple chronic illnesses together makes life even more excruciatingly painful and long.

Life with a Chronic Illness

When you have a chronic illness it’s nearly impossible to explain how it feels and how difficult it can make even the simplest of tasks. These are some things I wish everyone could understand about living with a chronic illness.

15 THINGS TO KNOW

The Physical

Exhaustion, Fatigue, and Sleep
  • Exhaustion is constant. This isn’t the type of exhaustion you have when you’ve been working long hours, worked out super hard, or haven’t slept very much. No matter how much rest you get or how little you do, you are always exhausted. It’s an all-encompassing feeling that takes over your entire body.

  • Fatigue is extreme and can be debilitating. Every day activities can trigger fatigue which often can cause recovery to last days, weeks, or even longer. In order to combat fatigue, a lot of rest is needed.

  • Sleep is difficult. Unless you’re extremely sick then getting good sleep doesn’t happen. You can’t get comfortable, you hurt. Sleeping in short naps all through the night is common and getting less than 4 hours of sleep a night is pretty much normal.
Exercise and Pain

  • Exercise hurts. Even just taking a walk sometimes is excruciating. So if that little bit of exercise hurts that much then actually getting a workout just can’t happen. Your joints hurt, muscles burn. It is not a normal hurt and burn from working out. This is a pain down to the fiber of your being, it makes you want to break down and cry.

  • Daily pain is typical. This is not a normal type of achiness. Pain can be in the muscles, joints, the skin, and the nerves. It can be so severe that sometimes it cannot be relieved no matter what treatments are tried.
Sickness, Infection, Work, and Rashes

  • Being sick is normal. There’s usually not a time that you aren’t sick in some sort of way. Whether it’s a cold, sinus problems, a cough, achiness, swollen joints…there’s generally always something that is making you sick. And when you’re sick, your immune system kicks into overdrive which makes you feel even worse.
  • Infection is a serious risk and fear. Something as simple as a cold can cause a person with a chronic illness to be down sick for a very long time. Since the immune system is generally overactive, it has difficulties knowing what exactly to attack. This causes the immune system to attack itself at times, which has to be treated with medications to suppress the immune system. Since the immune system is suppressed, something like the common cold becomes very difficult for the body to fight off.
  • Being unable to work doesn’t mean you’re on a vacation. When the inability to work hits it’s because you are sick and struggling to do daily tasks. Staying home because of this sickness doesn’t mean you’re actually getting a day off because you are still fighting just to function.
  • Rashes can pop up at any time. They can vary from just redness to raised patches. These rashes can happen because of infection, sickness, or just from being exposed to the sun.

The Mental and Emotional

Depression and Anxiety

  • Depression is more common than you think. This has always been a difficult topic for people to discuss, but it’s something that comes with having a chronic illness. All the fatigue, exhaustion, sleeplessness, sickness, on and on and on just makes you feel less than human and that leads to feelings of hopelessness and being depressed.

  • Anxiety is also a common issue. Since there is so much that can cause illness to strike, issues with anxiety are the norm. Constant worrying about when you’ll be sick again, if you will be able to do things that need done, or if there are sick people where you have to go can cause high anxiety issues and panic attacks.

Symptoms

  • Symptoms are not simply cut and dry. Every illness has its own symptoms but common ones are extreme fatigue, pain, headaches, nausea, dizziness, and memory issues. These symptoms can get better and worse over time which makes planning activities in advance very difficult.

Life

  • Having a “normal” life is almost impossible. Between the doctor’s appointments, constant tests, multiple medications, and illness, it makes it difficult to live a life that even resembles that of a healthy person.

  • Cancelling plans happens often. Illness can strike at any time, anxiety and stress can cause stomach issues, depression causes inability to function. All of these things play into having to cancel plans often. A sudden illness comes on, you stress and worry about your plans making your stomach become irritable, or depression worsens to the point of not even being able to shower. When these things happen, it is very common to call off plans.

  • Plans being cancelled can lead to people not inviting you anymore and the loss of friends. People get tired of plans being cancelled on them and when it happens multiple times repeatedly they can just simply give up and stop inviting you. It can also lead to losing friends because they just can’t understand why you are constantly sick or don’t feel well enough to even leave your house.

Illness Does NOT Define Me

Living with a chronic illness is no picnic. In all reality it’s a living hell. You never know what the next day will bring. Fatigue, exhaustion, and sickness are basically the daily norm. Nights are restless and often sleepless. Days are long and filled with pain, exhaustion, and sickness.

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8 comments

  1. I have experienced most of these things. I think the worst for me is that I began having pain and fatigue issues as a teenager but my mom never took me seriously. I am now in my 30s and still have no diagnosis because doctors don’t take me seriously either. Thank you for sharing and bringing awareness to the problems that people with chronic illness face.

    • Absolutely! Having a chronic illness and actually getting people to believe you is so difficult, especially when it’s an invisible illness. I was lucky to get a diagnosis but it still took time. I have been dealing with my illness for almost 20 years now. Thank you for commenting and I’m so glad you liked my post. Just trying to do what I can to get awareness out there about what we go through every day.

  2. So sad to see someone with chronic illness. I think what we can do for prevention is take the patient to the doctor when the illness has been lasting over 3 months..

    • We definitely need to pay attention to when someone is sick. But when it’s something invisible it is so difficult to know when they really aren’t feeling well.

  3. Really good info, thank you. I’m blessed to not have a chronic illness, but this info will help me be more understanding of those that do.

    • Thank you. The hardest illnesses for others to understand are those that are “invisible”. They rage war inside us but on the outside we don’t look sick so others often can’t understand.

    • Absolutely. Invisible illnesses are the hardest because we don’t look sick or fatigued on the outside. It’s extremely hard for others to understand how our body is raging a war on the inside.

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