1. How has your condition impacted you?
It has made me appreciate good days more and deal with bad days better. I have learned that it's ok to slow down and just rest. I have learned to be more flexible with life and unexpected events. I have learned to appreciate the simple things in life because some days I can't do everything I want to. I have had to slow down quite a bit, which is difficult to do in my 20's. But in the end, I think it has made me mature faster. It's like those elderly people sitting in their rockers, telling you all their wisdom; because they can't do everything they used to and realize what's important and valuable in life. It's kind of like that, except I am experiencing it in my 20's.
2. What would you like for other people to know about your condition?
I would like for people to know what it means. It means that you have some positive blood tests for an autoimmune disease or connective tissue disease, but the tests/signs/symptoms don't fit yet into a particular diagnosis. So, you have symptoms such as that with RA, lupus, fibromyalgia, or chronic fatigue syndrome, but the positive tests and symptoms overlap into those diagnoses making it difficult to get a definitive diagnosis. I would also like people to know that it is a chronic condition that changes daily and sometimes hourly. It is a very real condition and the symptoms can be disabling. I look healthy, but looks are not an indication of health. Many days I hide behind a smile and make-up to get through my day, even though I am very tired and in a lot of pain.
3. What would you like to tell someone who is recently diagnosed with your condition?
So many things . . .
- This is not going to consume your life, unless you let it.
- Some days are going to be really hard, so use all the tools you can to get through it (friends, family, medications, counseling, etc).
- Educate yourself.
- Find a doctor who is familiar with the disease, takes you seriously, and who thinks outside of the box.
- Put the pain to the back of your mind instead of the forefront as much as possible.
- Don't get frustrated about not having a definitive diagnosis. This will protect you from not getting health insurance or disability insurance and it is better than being misdiagnosed and mistreated. As long as your signs and symptoms are being treated, you are good to go!
- There will likely be other tough things in life that happen to you. Learning to deal with this will help you deal with other difficult events.
- Set boundaries with friends and family. Don't be afraid to say "no" when needed to rest.
- Surround yourself with a good working environment.
- Always show appreciation to friends and family for helping you. They are the best help you can get. After all, it is tough for them to see you go through this too.
- You can still live a very happy and fulfilling life.
- You are not alone.
Kelli's favorite quote: "The best way to deal with your own problems is by helping others with theirs." I don't know who wrote it, but I keep this in mind almost every day when it's tough to do my job as a physical therapist. Helping others who have an illness helps me deal with mine. Many people live through some very difficult things. It humbles me to see their experiences.
Thank you so much Kelli!!