Should I Have to Be This Strong?
I don’t know where it comes from, but there is a saying, "We’re only given in life what we can handle." I actually don’t believe this. In fact, I think this aphorism may be more hurtful than helpful.
It implies we can do everything on our own in life and also that people are inherently weak or strong. I really disagree on all fronts. I think we’re given challenges and we learn to handle them or not. How we respond shows not only who we are, but the resources we have available to us.
For example, I know that I wouldn’t have an independent life and be working if I didn’t have the support of my parents encouraging me and helping me along the way. Sure, I had the strength and creativity to figure out how to navigate problems and persevere. But, I also wouldn’t have been as successful without support behind me.
We all need support
Every individual needs support in their life. It can be role models to show us the way, coaches to encourage us, teachers to educate us, parents or family to pick us up when we are down, and so forth.
No one lives in a vacuum. We all need a network of support and, sometimes, we need greater support during really difficult periods of our life. When I had my joint replacements, I needed a lot of extra help. I’m not just talking about physical care - what was even more crucial was the encouragement to get through the recovery. I needed people telling me every day that although it was tough, I would get through it.
Cultivating personal strength
Another huge part of my life with rheumatoid arthritis has been cultivating strength. I was diagnosed as a young child at age 2. I didn’t understand what was happening and couldn’t foresee the challenges I would face like pain, loss of mobility, loss of strength, and increasing disability.
No one could predict what would happen, but as I grew up and planned for adulthood I had to learn to adapt, to live with the challenges of the disease, and to adjust to a constantly changing body while maintaining my health as best as possible.
How do you teach strength to a young child? The answer is - you don’t. I had to learn by teaching myself. Sure, I needed support from family and friends. But I also needed to decide for myself that I would do it. I just had to become strong in my mind and emotions.
I had to become strong in my mind and emotions
I say it like it is simple because it is. I just had to do it. If I was going to have the life I wanted — going to college, moving to a city, living on my own, making a life, traveling, and all the other details I dreamed — I had to just be determined to make it happen.
No one was going to do it for me. I had to decide that I could and then figure out the path as there was no guidebook for living with rheumatoid arthritis (RA) and disabilities and making a life for oneself. (If you find such a guidebook, please let me know as it would come in handy!)
I did not want to not live my life
For me, the other choice – that of not finding my strength and making my own life - was a non-choice. I couldn’t, wouldn’t, didn’t want to not live my life. It was just an impossible thing that couldn’t even be considered.
So I had to be strong. I had to find strength, cultivate strength, and practice strength. This meant not taking no for an answer. Always believing and finding a way to do things. Charting my own course despite the many barriers.
But should we have to be so strong?
As an adult, I find I still need this strength. I need it to get myself up every day when I have terrible fatigue and joint pain.
I need it when I am encountering an accessibility barrier in my wheelchair. I need it when I'm planning a trip and being told that I cannot go where I want to go.
But lately, I have wondered: Should I really have to be this strong all the time? Can we make things a little easier in our society for people with chronic conditions and disabilities? Do we have to fight all the time or can some of the work already be done?
A more inclusive world
I often hope that my fights for a more inclusive world for people with disabilities will mean that in the future others won’t have to have them, that so much strength will not be required for just living a normal life. It is exhausting and I hope that I can make things easier for the people with chronic conditions in the future.
I recently wrote on inclusion and my friend and fellow contributor Rick commented, "We have been trying to build a more inclusive society since 1990. That seems like a long time to run into such obstacles. But let's hope sooner than later." I couldn’t have said it better myself.
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?