• Cristina Waldner

5 Things You Should Know About Chronic Illness



Hi Everyone! Thanks for clicking this link and choosing to read up on this topic. It already shows that you are one step closer to becoming more awesome, so congrats!

Disability awareness is something I feel passionate about and that's good because I have a physical disability. However, my goal for this blog is to get everyone thinking and talking about this topic along with me. I want to break down barriers so that you and I can be just two people having a real conversation about some very real things.

Now, I hope that sentence didn't just scare you away. I feel like disability awareness is like the produce aisle of the grocery store, or better yet, like kale. Yes, disability awareness is like Kale. Tough to chew on, hard to swallow, but SO healthy for you. If you dig in and bite into it, you will get all the benefits from this superfood, full of antioxidants, nutrients, and minerals. Eating healthy is not always fun but it is important... or so I'm told. My diet mostly consists of cheese, chocolate and David's Tea.

But I think one of the reasons people don't eat a lot of healthy food is that it can be very confusing. One health study says to avoid all fat, while a different study says that fat is good for us. It's difficult to navigate the seemingly contradictory messages so we end up doing nothing.

This is exactly the dilemma I was facing as I was writing this post. If I go too general with the information, I run the risk of clumping all people in the same category. If I go too specific, I only address certain problems in my life but want to reach a broader scope. I also don't want people to be so scared to say or do the wrong thing that they avoid all people with chronic illness.

So, with that all in mind, let's tackle this complicated topic together and start exploring the produce aisle!


5 Things You Should Know About Chronic Illness:

1. "I See You!" Being in a wheelchair does not magically act as a two-way mirror. People with chronic illness are painfully aware that they are different than the majority of the population. Being in a wheelchair because of SMA or being bald from chemo does not have to be something to be gawked at. On the other hand, it is also strange to be ignored altogether. Not wanting to be guilty of staring, we avert our eyes, quickly look away, or look right through them. While that reaction is kind in its own way, I guess, it also makes the person feel 2" tall... or less. Life Lesson: Everybody has a basic need to be seen, heard, and loved. Period. A friendly smile and a simple hi go a long way.

2. Ordinary People with Extraordinary Circumstances. A person with chronic illness has the same range of emotions, fears, hopes, dreams, and desires as anybody else. Any emotion you have felt in your lifetime, they have felt too. And related to that, having an illness does not automatically discount them from the possibility of relationships, dating, marriage and yes, even sex. Anybody who knows me knows that this is an extremely difficult topic for me and I am squirming as I am writing this but it really needs to be said (Can you say fear of intimacy?). If disability awareness is about breaking down barriers, this is a major one. It's like the Great Wall of China-big and if that means I have to be uncomfortable for a few moments to break down some stereotypes, so be it.

3. Every Illness is Different. My experience with SMA is not the same as someone's experience with MS or a different person's struggle with an invisible illness, like depression. Just because you know someone in a wheelchair does not mean that all people in wheelchairs are the same. This may sound like common sense, but you’d be surprised how often our preconceived ideas affect our interactions with people with disabilities. Be aware of the stereotypes and prejudices you may have about chronic illness and keep an open mind as you meet people with varying abilities. (I think this will need a separate blog post in the future because you would not believe how often hurtful stereotypes come up.)

4. Familiarize, Don't Criticize. People with chronic illness have a lot on their plate and might make decisions or live their life in ways that seem strange or unhealthy. While people with chronic illness might not always make the wisest decisions all the time, remember that they are just doing their best with the unique circumstances they are faced with every single day. It is impossible to take a break from a chronic illness and the constant demand can be grueling. No matter what level of abilities we have, I think we could all be kinder to one another and realize that stress makes people do strange things sometimes. Instead of passing judgment, try to learn about the person's world. Ask questions. Research. Educate yourself. But do not put a guilt-trip on them for what they can and can't do.

5. Empathy, Not Sympathy. One of the worst feelings is to be pitied. It doesn't help anybody involved. The pit-ee feels ashamed and embarrassed, and winds up trying to convince the other that having a chronic illness isn't so bad. The person with the illness might even feel as though they have to put on a superhero persona just to avoid the other person's sympathy. The pit-ier, on the other hand, squashes the opportunity to have a real conversation with that person and goes through life not ever knowing other people's pain. That is why empathy—a genuine attempt to understand another person's life story—is so powerful. It allows both people an opportunity for relationship. I cannot tell you what a burden-reliever to have someone say to you, "I might not ever fully understand what you go through each day, but I am here for you and want you to know that you are never alone in this. I've got your back." In that moment, pity is replaced with connection and that is a pretty cool thing.

Whew. So, how did that bit of kale taste? Hopefully this article is food for thought and that you would continue to be open to learn. I know I have a long way to go in this area myself but we all have to start somewhere.

Now, I have a sudden a craving for veggies (although for me, they still need to be drenched in ranch dressing). Until next time!

- Crissi xo

#chronicillness #livingwithadisability #smaawareness #musculardystrophy #wheelchair #disabilityawareness

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