If someone were to ask me to describe what it’s like to live with a chronic illness, I honestly wouldn’t know what to say. Perhaps it’s the expectation of living a normal life and remaining “active” with drained out batteries. The fear of being bed ridden or dependent on other people, the guilt of letting people down, the pain of feeling left behind and missing out on things, and the unpredictability of the illness itself. In addition, it’s the constant struggle to educate and create awareness amongst family, friends and co-workers, all the while hearing insensitive things since nobody has any idea how disabling it can be.
To be honest, nothing I say will actually do justice to what it’s like, however, there’s certain things I can tell you for sure. They are:
- Our lives are very different from your lives.
How? You may ask! In addition to all the regular challenges that are part of adulthood, we also have to worry about pain, fatigue, nausea, migraines, physical limitations, brain fog, sleep difficulties, medications, a ton of appointments – with the doctors’, chiropractor, massage therapist, physiotherapist, acupuncture – cancelled plans, and most importantly, trying to keep up with people’s expectations of us.
- It’s not fair to have the same expectations from us as you would from a perfectly healthy person.
This is a never ending struggle! Most people tend to forget that a chronic illness is something you have to deal with everyday of your life. So just because you see a smile on our faces doesn’t mean we aren’t in pain. And that certainly doesn’t make it okay for you to have the same level of expectations from us as you would from a perfectly healthy person. Think about the time you empathized with someone who got sick just for a few days. Didn’t you cut them some slack? Now imagine being sick for weeks, and months, and years. Don’t you think we deserve the same?
- If you see us “enjoying ” ourselves, it doesn’t mean we aren’t sick.
You see us put up a picture on Instagram. We are laughing and having the time of our lives. You automatically start judging and think to yourself, “She looks absolutely fine there. It doesn’t seem like she is in any kind of pain. In fact she is out and about, having fun! Yet she has no time for me.” But did you know that I had to save my energy all week long just to go out that one night? Or that it took a lot of convincing from my family and everything in me to drag myself outside in an effort to feel better? And that the entire time I was out, I was trying super hard to forget about the physical and emotional pain I was in? Can a picture ever tell you the struggles behind that moment? Definitely not!
- We pay the price for it each time.
We absolutely love catching up with you; those long phone calls and all our time together, but it can be very draining on us. Unfortunately, we always have to pay a price for all the fun we have. Every time you see us dancing it up at that party or spending an entire day outside, you will find us trying to recuperate for the next few days. We spend every single day of our lives making decisions on what we are able to use our energy on that day. Every single interaction takes from the very limited amount of energy we have.
- Fatigue is different than being tired.
I think fatigue is harder for healthy people to understand than pain because everyone has felt pain at some point in their lives, even if it’s not as bad as our pain. However, healthy people can’t wrap their heads around what it feels like to be exhausted even after 12 hours of sleep. Or feeling the need to take a nap just after freshening up and having breakfast. But hey, thanks to fatigue, it is totally possible for us to be way more exhausted than you even if you have had a 5 day work week and we have only had a 2 day work week. Or if you’ve been having super long days in comparison to our super short days!
- We are going to live with this for the rest of our lives.
There’s no “cure” for our illness. This is going to be our life for the rest of our days. If you decide to stick around, make sure you’re able to handle being there for us through our ups and downs. Unfortunately, cancellations and disappearances may be part and parcel of being friends with us. That actually has nothing to do with you and everything to do with our health condition! We understand if it’s too much for you to handle but please understand that it’s not fair for you to take it personally and expect us to explain ourselves each time.
- We don’t want to sound like we are complaining.
Being tired or not getting enough sleep the night before can easily come off as ” complaining.” This is the reason why most chronic illness warriors aren’t vocal about their struggles. We would rather keep things to ourselves than have people think that. But please keep in mind that there is a huge difference between feeling that way once in a while or feeling like that everyday of your life.
- We just want acceptance.
Honestly, we just want to be heard! We want people to stop pretending like there is nothing wrong with us, to recognize our challenges, listen to us when we feel the need to vent and maybe just give us a hug at the end of it all!
These are 8 things I’ve thought about and wished I could tell my own family and friends but have never been able to. Maybe because my chronic illness never becomes the topic of conversation. Maybe because I’m used to keeping that part of my life to myself, maybe because I’m used to suffering in silence or maybe because I just don’t have the energy to educate. But it feels good to finally get it off my chest!
If you have a chronic illness, what do you want to tell your family and friends about your life? Let me know in the comments below!
With love and spoons,