Understanding Chronic Illness From the Outside

Most people with chronic illness, such as autoimmunity, put up a brave front. Sometimes, that makes the people around us think we’re not all that sick. That’s likely why we’re often misunderstood. The problem with chronic illness is that it doesn’t always show. There are good days and bad. When you see someone on a good day, you may think they’re back to normal, or even that they’re really not all that sick. So, you treat them as you would anyone who’s healthy and well. You treat them like they’re normal.

What’s so bad about being treated normally?

Nobody wants people scraping and bowing to their illness. Most of us are proud of the fact that we work hard to reach our daily goals, despite feeling so bad. Personally, I’m grateful for the many things I’ve learned through chronic illness. In a way, I’m even glad people see me as normal. That means I’m kicking Lupus to the curb. So, what’s the problem?

Some people with chronic illness have a history of care-giving.

Speaking as one of those caregiver types, I like feeling useful. I like helping people. I’ve been doing it all my life. It makes me happy. Unfortunately, Lupus now dictates exactly how much I can do and for how long. When I’ve done enough for the day, I simply shut down. I have no choice in the matter at all. This is a constant issue for those with chronic pain or illness.

When things get uncomfortable.

I love helping my friends and family when I can. What I don’t love is that because I’m generally so positive about this illness, sometimes they don’t see when I’ve reached my limit. They’re not rude or inconsiderate. Still, I feel like they just don’t quite get it. It goes something like this, “We spent the whole day having fun together. It seems like you’re feeling pretty good. Can you give me a ride home?”

“Um, no, I’m exhausted. I’ll be paying for my fun. I just wanted to feel normal and enjoy time with my loved ones for a change. I’m done now. I need rest.”

Asking people with chronic illness for favors.

Be realistic and considerate. They just don’t have it in them. They’re fighting an invisible battle that takes all their strength. Those with kind hearts find it tough to say no to your requests. They may not wish to burden you with their struggles. That’s why it’s up to you to recognize the fact that they have limits now. You have to realize that they need your support. Nobody likes it, especially the person who’s sick. Still, it’s an important realization.

Seeing the truth behind the smile.

On the outside, people with chronic illness may look like they’re handling things quite well. They may very well be. The thing is that sometimes, they’re running on fumes, both mentally and physically. Me, I’m a rock star at conquering what I need to get done in my own life. However, to be perfectly honest, I don’t really have what it takes to continue being anyone’s salvation, aside from my own.

I’m sad that I can’t be who I once was for people.

I completely understand why someone might feel left out of my life or that I just don’t care about them since becoming ill. It’s just that I can’t do much about it.

  • It upsets me that I can’t help everyone out.
  • It pains me that this disease forces me to be slightly selfish.
  • It’s hard to admit that I just don’t have the energy it takes to worry about more than me right now.
  • It hurts when I realize someone has been confiding in me and I haven’t heard a word they said.

Sometimes I’m just fighting the pain or my brain has taken a pause. I hate when my meds or my mood swings cause me to snap or lose patience. Worse, though, I know I’m not the only one.

Every person with chronic illness is different.

I’m lucky to be able to do the things I do. There are days when I feel good enough to work out, garden and more. Not everyone is so lucky. On the other hand, I have really bad days too. Don’t be so quick to compare people with similar chronic issues. Some are in more pain than others. Some have more bad days than good. Some may feel fantastic one day and at death’s door the next. What you see as a lack of gumption, may simply be a lack of ability.

Note: Meds and therapies impact people differently too. For instance, most people tend to get hungry on prednisone. Me, I have to force myself to eat normally, due to loss of appetite. And, get out of my way when I have to take extra. I don’t even know who I am on those days.

If you have a loved one with chronic pain/illness, try to understand their position.

  • Despite your keen observations, they really are sick. Looking good on the outside doesn’t always mean they feel good on the inside.
  • Just because they can accomplish something one day, doesn’t mean they can do it consistently.
  • They’re handling their own life like a champ. That doesn’t mean they have the strength to help you with yours.
  • When they get grouchy or even downright intolerable, try to remember it’s not about you or them. It’s about the illness, the medications and the constant struggle.
  • Small issues or occurrences seem insurmountable when they’re already pushed to the limit. They may have outbursts. They may even seem cruel or irrational.

Having a loved one with a chronic illness isn’t easy.

It can quickly take a toll on friends and family. The best thing you can do is remain positive and support them, no matter their mental or physical state. When it feels like you just can’t take any more, turn your thoughts in their direction. What if you were the one who was ill? How would you wish to be treated? Life doesn’t always hand us rainbows. Sometimes we have to create them for ourselves. Be the strength they don’t have and be glad you have the strength to do so.


Care Continuum Alliance

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