Try to Understand

Mar 25, 20233 min read

Some people will never understand... it's that simple. They'll never know what it's like to have an "invisible illness". They'll never understand the worry and anxiety that builds up inside. They will not understand why something like a common cold can wipe us out completely or turn into something worse. They'll never know when we're suffering because we've gotten so good at smiling through the pain; physical or mental. They'll never know what it's like to live in a bubble because sometimes, we just can't be careful enough. They'll never feel the gut wrenching sickness of hearing the words, 'we're admitting you'. Or the devastating news that our body didn't take to the treatment. They'll never see the tears we cry at night because this illness forever changed our life. However, we are here to share our stories in hopes that knowledge is power and the more we share, the more they can TRY to understand. Also keep in mind, not everyone WANTS to understand and that's OK too. Unfortunate, but OK nonetheless.

In addition, I wanted to provide a gentle PSA reminder that NONE of us asked to be "sick"... none of us said, hey Universe give me a rare blood disease please! Or hey God, can you please give me a chronic disease that there isn't a cure for? Buddha, are you there? Can you please give me a disease that nobody knows anything about? Allah, please riddle my body with pain so that everything hurts. It doesn't work that way my friends. Sometimes we go through spouts of anger and frustration because WE DID NOT ASK FOR THIS! Even though we didn't ask to be "sick", it IS our reality. For some of us it's a daily struggle and for others only sometimes but either way - we have an illness that has changed our lives; an illness that most people will never understand.

*Random squirrel thought:

I was on autopilot for a long time. I kept going and going and going. I never wanted people to see me sick or think that my illness was hindering my life (even though it really was). I worked extra hard in my career, so that co-workers wouldn't gossip. I didn't want to seem weak or incapable. I was afraid of being looked at differently. Then I realized... I AM different, I AM sick, it DOES hinder my life... and all of that was OK and you know what else is OK? Not being OK 💜

*End squirrel thought

While we may never be able to make people understand what we go through, I encourage you to continue to share your story, to share your experiences and to share your circumstances. Those around us can't understand us if they don't know... so let's help them understand. Let's educate our friends, family, co-workers, and neighbors on our conditions. No one case is the same and while we all battle differently, we are still WARRIORS, together.

So whether you're reading this as a patient yourself or someone that has never experienced anything like we do... Welcome! I hope this blog can bring you some comfort or some wisdom.

Things don't need to be awkward when you hear big news from a loved one. Here are some things you can say when you're not sure what to say 🫶🏼

• How are you REALLY feeling?

• You must be exhausted, can I come by and help with laundry?

• I can't imagine what you're going through but I'm here for you (only say this if you actually mean it)

• I'm going to drop off dinner tonight, what time works best for you?

• Give a hug and then you love them