How is life with Chronic illness?
Every chronic illness & everyone’s experience of that illness is different, but there are things that many people experience, regardless of which illness they have.
Here are some of them:
- The feeling of constantly having to fight for your right to be diagnosed, get the right treatment, being listened to & understood by the health care system. Instead you’re being gaslighted by doctors telling you it’s all in your head, or due to stress.
- The financial strain it means to be on medical leave.
- Not being allowed to be on medical leave long enough, because society wasn’t built for chronically ill people. So instead you continuously bulldoze yourself to be able to have a job & try to maintain a somewhat normal life.
Chronic illness can make life empty
The grief of having to give up on the life you had planned, the person you wanted to be, because you can no longer do the things you could before. Instead you have to learn how to live with illnesse-s that control your life.- You might have to give up on activities, foods & beverages you love, to make your body react as little as possible.
- Your illness eats at your energy & you have to cancel plans, because everything costs energy, both positive & negative, it all adds up & drains your energy reserve. Sometimes the energy is so low that your cognitive functions stop working, because all your energy goes to trying to heal your body.
Knowing that there’s no cure for your illness, you’ll have to live with it for the rest of your life. You might have to go through tons of unpleasant exams on a regular basis, surgery & take meds that have an array of side-effects.
Having to listen to people telling you that you did this to yourself, you’re not trying hard enough to get well, that they too get tired sometimes or if you’re tired go for a walk or take a nap & you’ll be good as new.
Do you tell about your illness?
Do you tell people at work that you have a chronic illness or not? And if so, at what point do you tell them? Telling them might affect your chances of keeping a job, or getting a promotion. Not telling them might make your life harder since you have to come up with excuses for a bunch of things, never feeling truthful.
Things that should be personal, like your body & what it does becomes the talk of the town. Everyone is involved in every little detail of your body’s issues. It’s exhausting & you don’t always want to talk about it.
Chronic illness may lead to lonelyness
People who you were close to don’t know how to act or what to say when you get ill, so they sometimes disappear from your life. Not only are you losing & grieving the part of you that you’ve lost, but you also have to grieve the friends that weren’t there for you because your illness was too inconvenient for them. It becomes up to you to lift them up & downplay how you feel because they can’t handle it.
You have good days, OK days, bad days, days that are downright awful & then you have days where you don’t know if you’ll make it to the next.
- Imagine not wanting to leave your house because your stomach might act out & you don’t know if you’ll find a toilet in time.
- Imagine feeling like you have the flu 24/7 every day, all day.
- Imagine putting on the shower & your skin hurts when the water hits it.
- Even the thought of having a shower can make it hurt.
- Imagine being so exhausted that your cognitive functions stop working. You can no longer talk, write or read. The words just aren’t there or they merge into one.
- Imagine having to rest for days before & after doing something fun.
- Imagine being gaslighted your whole life by people who’re supposed to help you.
- Imagine this being your life for the rest of your life.
How does that feel?
If you can imagine all of those things, then maybe you have a little more understanding of what it’s like living with chronic illness.Living with chronic illness isn’t just physically strenuous & debilitating, it’s emotionally & soul crushing as well. It affects every single aspect of your life.
