Dear Younger Self or anyone Newly Diagnosed,
I’m not going to lie, living with arthritis is not fun and it can be hard. However, even if it is difficult to imagine or understand now, there are so many blessings in disguise that are going to come out of this. Just wait for the amazing friends you’ll meet, incredible places and things you’ll get to see and do, and meaningful perspectives you’ll gain, all thanks to this condition.
Whether you’ve been dealing with the chronic illness and disability world for a few weeks or decades, you are always learning, growing, and going through ups and downs, so I wanted to share some things I’ve learned over the 15 years I’ve lived with arthritis. I also won’t pretend like I have it all figured out either. Even though I’ve dealt with arthritis since the second grade and I just graduated college, I am no expert. It still is hard for me to ask for help sometimes, I still can get nervous advocating for myself, and there are still far too many days where I know I am not listening to my body, but I continually am striving to grow and thrive, as well as help others in similar boats to do the same.
In this letter, I’ve compiled a list of the top tips and pieces of advice that I feel are most important for those with chronic illnesses to understand and live by, whether you’re newly diagnosed, or are just looking for some reminders that will make your life easier. These can be applied to those with arthritis or other conditions, and many are things that I wish I could go back in time and tell my younger self, who was a lot less comfortable advocating, speaking up, and taking care of herself.
1. There will be good days and bad days.
When you’re in a flare and constant pain, it can feel like it will last forever but know that better days are coming. And if you’re doing well, don’t worry about “what ifs”, just enjoy and appreciate feeling good! If your health has been smooth sailing for a while and you hit a rough patch again, don’t get too discouraged. (I know, it’s all easier said than done…)
2. Your health comes first.
School is extremely important. Work is extremely important. As someone who puts way too much pressure on themselves in these areas, I want to say that while school, work, sports, etc. are priorities, so is your health, and you should never be so stressed or work so hard that you are hurting your health.
3. Don’t be afraid to ask for help, it’s okay to take a break, and rest is important! This is one of the most difficult things to do. I get it; You have a fear of missing out on things. You don’t want others to judge you or stare at you wondering why you can’t do something. You’ve put a lot of pressure on yourself and feel lazy if you rest. There is so much you would rather be doing than sitting with an ice pack on. But it’s good for you! Plus, everyone needs rest, not just people with chronic illnesses.
4. You know your body best and you are your biggest advocate.
Many conditions, like juvenile arthritis, are invisible illnesses, which adds its own new set of challenges. One of the most frustrating things is when someone doesn’t believe you when you say you can’t do something, but don’t be afraid to speak up and respect your limits. People also usually can’t tell just from looking at you on the outside that you are in pain, struggling to do something, or need accommodation, so use your voice and don’t let anyone invalidate your feelings or experience.
5. Your true friends will support you and care about you.
For a long time, I didn’t want anyone to know I had arthritis and hated when my mom brought it up to people. However, I slowly realized that true friends and people worth having in my life would not judge me and would be supportive. Now, I spread awareness on social media and talk about it much more openly for the sake of awareness. Changing this mindset allowed me to see how special it is to have such a large support system that will join and attend arthritis walks, come to my fundraiser events, and join me in my advocacy efforts and fight for a cure. I appreciate it now when friends want to learn more about my condition, ask questions about it, check in on how I’m doing or feeling, and offer help when I am flaring. Yes, there will always be people who seem to not understand or care how much your condition and symptoms affect your life, make you feel guilty for not being able to do something or cancel plans, or aren't as supportive as you would hope. Don’t expect new friends or coworkers to automatically know exactly what to say or do, as it is likely brand new to them, but if they invalidate you or make life with your condition more difficult, then it is okay to move on and focus on the people that truly care and support you because they are who matter. I’m still practicing how to not care so much about what other people think, so if anyone has this figured out let me know, but I do know that I have the most amazing friends both with the same condition as me or who are completely able-bodied that I am grateful for every day!
I leave you with my final, most significant piece of wisdom:
You are not alone! Get involved with an organization that supports your condition or a similar one, such as the Arthritis Foundation and Take A Pain Check, like I have. Find your community and lean on them! Some of my best friends in the entire world are people that I met and grew up with at arthritis camp, along with other volunteers and staff at the camp that do not have conditions but support me in all I do throughout my arthritis journey, and they’ve been by my side every step of the way. Give back to these causes and help advocate or fundraise for a cure! It helps to use your pain and frustration for something you typically don’t have much control over as fuel and passion to make a difference.
I hope will remember these tips to make your life with a chronic illness just a little bit easier!
Sincerely,
Aubrey