Tips and Tricks to learning to Live Well with Lupus- at 22 years old
The key word in my title is “learning” to live well. I emphasize this as it is not something that can be done overnight, but rather a continual and on going evolutionary process of change that allows one to learn to live well while battling a chronic illness, and it is not something that happens without a few bumps in the road either, but learning how to better cope and deal with those unexpected curve balls lupus throws your way- that is what makes the difference.
For me, this has certainly been a constant ongoing process, that has occurred simultaneously with accepting my illness as I was diagnosed just over a year ago at age 21. This, I have found has been my biggest struggle. I am young (relatively speaking) and want to do everything and anything I choose- from going out on a night on the town with my girls, visiting my Alma Mater, Cortland (a good four hour drive away) or simply going to grab dinner somewhere- but because of the unpredictable nature of my disease, unfortunately, it seems as if it can be almost impossible to make plans ahead of time… But there are ways that you can make plans, see your friends and balance a social life with lupus even when you are not feeling at your best and here are some tips and tricks to help you do so:
1. Find a good Support System- I cannot emphasize this enough! It is so important that the people that you chose to let into your life and surround yourself with understand your illness. Help educate them, and explain that their support makes the world a difference to you and your ability to live well, and remember, a support system is not just family, friends and support group members you meet, they may all be a part of this system for you!
2. Be Flexible- Plans change, and they will change last minute! You need to be sure your friends understand this when they make plans with you. For example, if your suppose to go out for a nice girls dinner but are feeling under the weather- ask your friends if they would mind staying in for a girls night in at your place and ordering Chinese! This way you still get to be together and catch up with good friends. This is something my friends have been incredible with from the start (I mean my closest friends!) If someone cannot rearrange their plans than simply explain to them you do not feel up to it and hopefully they can reschedule- Do not stress over these things!
3. Listen to your Body- I can hear my parents laughter as I type this, telling me to take my own advice! But it is so crucial, and in my opinion a key element in learning to live well with lupus and maintain a social life/relationships. If you notice your fatigue increasing, and your joints getting more achy, take a breather and sit down. REST! It is your body’s way of telling you your pushing it, and resting now could mean the difference between a few days off the grid (while you rest) and a major flare (which we are trying to prevent at all costs!)
I hope these simple tips and tricks help and keep you motivated and striving to learn to live well with lupus! Just remember- it will never be a skill that is mastered- but one that is constantly being worked on- So enjoy the process.
Kimberly Lehanka, 22, lupus and a various assortment of other autoimmune diseases, writer for CHRONICLYsILLy- a humorous blog that takes a positive spin and comedic approach to life with lupus! Making each day you’re chronically ill, a little more CHRONICLYsILLy!