You’re at your doctors office one day after getting some blood work and tests done. After getting invited back to his/her office, you sit nervously waiting for him/her to walk in and give you news. And at this point any news would be good. You just want some clarification on what is going on in your life. Once your doctor comes in, they tell you that you’ve been diagnosed with an illness that will change your life forever. NOW WHAT?
The simple question above is the major reason why I advocate for myself and others. Because while our doctors will assist us to navigate the symptoms of whatever we’ve been diagnosed with, after that they have proven to not be much help after that. As a patient we are supposed to figure everything else out ourselves. In a short period of time, a patient is supposed to go from healthy, to diagnosed and having their life turned upside down, and back to functional part of society without a problem.
I found that many if not all of us, are given a Mount Everest of a challenge to navigate and at the same time many if not all of us are not given any help or resources to take on the adversity that lies ahead. We are basically left out in a forest without any supplies or equipment, but have to find our way back. And sadly we don’t have Bear Grylls to guide us. That is an impossible task, yet every day we are expected to do it.
This is why I started to work extremely hard to advocate for myself and others. I truly believe that there is only one way for things to get better in our lives, and that’s with us putting in the work to know our illness and all the challenges that come with it, inside and out. I personally look at this task like a professional athlete might look at the tasks within their sport. There is no magic button that they are able to push and then be one of the best athletes in the world. They must put in hours upon hours of work in order to improve every single day.
Now I know you just read that and said to yourself “This guy Brian is an idiot. I’m sick. I can’t do anything like an athlete.” and part of me agrees with you and there is another part that doesn’t but I will circle back to this in just a little while.
There are so many things that will be downright impossible for us. This isn’t because we don’t want to or are lazy, it’s because our mind and bodies aren’t able at this time. A simple task like taking a shower for a normal person might be 10 minutes? For a Spoonie it might be 60 OR MORE. Let’s break down what it might be like to take a shower for many of us.
- 15 Minutes – Sitting on the couch trying to get the energy to shower. (This could be much more.)
- 10 minutes – Getting everything we might need in the right spot in the bathroom for a shower (This could be much more.)
- 20 Minutes – Actually taking a shower and getting lost in the hot water which might be the only temporary relief we get for a while. (This could be much more.)
- 15+ Minutes – Relaxing after taking on the challenge of cleaning ourselves to take part in society. (This could be much more. Seeing a pattern here?)
Now that is a breakdown I just thought about in 90 seconds while sitting in front of my computer. In reality I know that it’s been much MUCH longer than 60 minutes for me and others. And the fact is, not many people understand how hard it is for a patient living with a chronic illness to do simple tasks. PEOPLE NEED TO KNOW THIS! People need to know how hard life can be on a daily basis.
This is the perfect time to circle back around to my athlete analogy. I don’t want to be the person who says you can or can’t do something. I already know that you can do more than you think, and I have the confidence in you to do more even if you don’t. But I don’t mean you should go out and play basketball like Lebron James or become an Olympic swimmer like Michael Phelps, but what I do mean is taking their mindset and applying it to your disease.
You have to put in the work to overcome your disease. There is no magic button, no magic pill. You have to take this challenge head on and figure out what works for your mind and your body.Brian Greenberg
You might not be able to get out of bed one day, but you can read in bed and learn about different treatments that might be available to you. You might not be able to really focus on complicated task due to brain fog, but you can write out various thoughts on that task to come back to the next day. You might not be ready to run a half marathon, but you can go and walk a mile around your neighborhood with a friend. The hardest step for us many times is to just take the first step, but it’s on us to do so.
So getting back to the original reason why I advocate “Now what?”. After living with multiple chronic illnesses since I was 11 years old, I’ve learned a tremendous amount on how to navigate the rough waters of living with daily challenges. I want to help others navigate the same waters I have. Whether is just be surviving the day in front of them, taking the next steps to learning how to live with their disease, or tackling a goal they have in mind (no matter what the size), I believe I can help.