A Palindromic Rheumatism interview .

MaddOryxite's interview


How did all start?

I've had episodes of on and off pain since I had a serious knee injury at 15. But, the doctors I saw largely wrote me off. I was told to eat better and exercise and I wouldn't have pain. Ten years later, I still had these episodes and doctors still ignored me. I pretty much just dealt with it, until one day I couldn't. I was sitting at work when I suddenly became very uncomfortable in my chair. I shifted around, but sitting there I felt like I had a knife in my hip. As I shifted around to alleviate it, I started feeling that sharp pain in my wrist, my ankle, and my hands. This was more pain than I'd ever experienced and it was coming at me from what felt like all angles. I left work and went straight to my doctor and he immediately referred me to a rheumatologist and gave me medicines to help the pain in the meantime. When I saw the rheumatologist, I went through all the testing and was diagnosed only two weeks later.

Do you already have a diagnosis? How long did it take you to get it?

Yes. From that last episode to diagnosis was a three week period, which is pretty quick. If I count from the first flare I ever had, it took years and many, many doctors before I was taken seriously.

For what medical specialties have you been treated? What has been the most useful specialty for your?

I see a rheumatologist. I've had two specialists now, and they've been good. Since it's an autoimmune disease you really need a rheumy.

What has been the most useful thing for you so far?

Medication, for one. My quality of life was much less without it. Other than that, my TENs unit is my favorite thing. It doesn't get rid of the pain, but it does lower the intensity and keeps me mobile when I might otherwise not be. Since most of my flares start in my hip, they can really hurt my mobility. A lot of times, I can hook the TENs up to my hip and keep walking. It makes things more manageable and helps me feel less stuck.

What have been your biggest difficulties?

The up and down nature of this disease has been very hard on my mental health. It's hard to explain what it's like going back and forth between being able and being unable. I have struggled with making plans and having to cancel because I can't walk far. I've gone to bed wanting to take a morning walk with the dog only to be stuck in my apartment. And then the reverse as well and the fear that kicks in. I'll be perfectly fine and able to go out, but I worry about flaring in the middle of downtown or going out with friends only to have to stop. It's been hard to keep everything balanced and not be paralyzed by the possibility of coming flares.

How has your social and family environment reacted? Have your social or family relationships changed?

Yes, some things changed pretty drastically. I had a relationship that didn't survive that first year post-diagnosis. My close family and friends are mostly the same, but there are people that just don't understand the invisible nature of the disease. It's that "you look fine" thing people do. I've had to fight to get people to understand that this is real and I have to live with it. But while I've lost some relationships, the people that really care about you go through the trial and error and eventually figure out how to be supportive.

What things have you stopped doing?

I've stopped most intense physical activities. I've found that being overly active can trigger flares so I've been sticking to light exercise. I also am more careful about making plans too far in advance. Since I never know when a flare will happen, I'd rather only plan things I genuinely want to/think I can do, and avoid cancelling lots of things.

What do you think about the future?

I'm still not sure what'll happen. I've only been diagnosed a few years and I'm still figuring things out. I'm starting by managing my condition and trying to surround myself with people who listen and are supportive. That's really the main goal for now.

So far, which years have been the best years in your life? What have you done during them?

If I had to answer now, I'd probably say the 2 years pre-diagnosis. I moved to a new country on my own and got a job I loved; everything was really great. Since diagnosis, things have been a lot harder. I got a new job I love and I'm still in that country on my own, but I've also had some loss and I'm figuring out how to live my new reality. I'm hopefully that in another couple years I can change that answer, but I'm not there yet. It's a process.

What would you like to do if you didn’t have your condition?

I'd like to be able to go out and travel and do fun, active things without worrying or holding back. I really think just going out without the fear of pain; that's something I really miss.

If you had to describe your life in a sentence, what would it be?

My life is evolving. That's really where I'm at right now. It's changing a lot and I'm not quite sure where it's going, but it's going to somehow end up better.

Finally, what advice would you give to a person in a similar situation?

Take it slow. Learn how to talk about what you feel, how to describe your pain and your limits. Develop keywords and language to express what you feel and what you need. So much of my first year of this illness was miscommunication and the isolation that came with that. The sooner you can figure out how to express yourself, the easier it will be to communicate with those close to you and for you to feel supported and connected to people. That's so important in this process. Also, find things you can do when you're in pain. Discover new hobbies and ways to stay connected even if you're stuck in bed. It's really hard feeling your body fight against you and not being able to do things. Finding a way to keep your mind engaged and interacting with the world will help you cope and stay sane.


Dec 1, 2019

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