By Frances Downey, as told to Sarah Ludwig Rausch
I was diagnosed with psoriatic arthritis 9 years ago. Looking back, I realize that I had the symptoms for quite a while before that, and it took about 18 months to get diagnosed. So I’ve had this disease for about 12 years.
There are plenty of challenges when you live with psoriatic arthritis. Since I’m single, some of mine may be different from someone who has a partner.
For instance, because my flare-ups look like I have the flu, if I’m having one and I’m in bed, there’s no one to clean the house, do the laundry, go grocery shopping, or pick up my medications. I have to rely on others to do that or I just do without.
It’s also really hard dating, especially knowing when to tell the person that you have this disease. When I have brought it up, they don’t get it. They think of their grandmother who has arthritis and don’t realize that this is different and can affect your whole body.
I’ve heard from many people that they’ve lost friends due to psoriatic arthritis. I certainly have. People just don’t understand this disease and that it’s unpredictable. Sometimes you’re unable to keep social plans because you don’t feel well, and that can be hard for friends and partners.
Despite the challenges, I’ve learned ways to handle my disease and make life easier on myself.
Track Triggers for Flare-Ups
I believe the major trigger for flare-ups is stress. For me, when my medications aren’t working, that can cause a flare-up, too. My doctor says lack of sleep is another cause. Certain foods may be a trigger too.
What causes a flare-up for one person doesn’t mean it’s going to lead to one for someone else, though. And sometimes you have a flare-up, and the doctors can’t figure out what caused it. It just happens.
The key to recognizing triggers is keeping a log. There's a great app called ArthritisPower that helps you track your sleep, fatigue, pain, and other symptoms. This can help you figure out triggers. It shows you the data it collects in different charts and graphs. You can email that information directly to your doctor so they can use it to have data-driven conversations during your appointment.
The data is donated to the research registry so that researchers can use it for their studies. You can also participate in surveys and other studies that are going on inside the app.
Keep Stress at Bay
I’m a more relaxed person than when I was diagnosed because I found out very quickly at the beginning of my own experience that stress caused flare-ups. So I’ve been training myself over 9 years to recognize when there is a stressor or there might be one that could occur.
I ask myself how I’m going to deal with it. I remind myself that I can’t get stressed because I know what it’s going to do to me. That gentle reminder helps me a lot.
I also take time to avoid causing myself stress. For example, if I’m meeting friends for lunch, I don’t leave at the last minute. That way, I don’t get nervous about traffic or being late. I can give myself a 15-minute buffer, relax, take a leisurely walk to the restaurant, have an enjoyable lunch with my friends, and come home, versus having a stressful time.
Things that you have control over, control them, because there are a lot of things in your life you don’t realize that you do actually have control over.
Get the Most Out of Treatment
Follow your medical professional’s instructions, regardless of how you feel. You may feel great, but you should not stop taking your medication unless your medical professional has said you are in remission and it’s OK to stop.
You can also be in remission while you’re still on medication, so that’s why it’s important to get your doctor’s blessing before quitting. If you stop on your own, you may have a flare-up.
Keep a log of any improvements or setbacks so that you can talk to your doctor about it and get the best treatment plan. Then you can give them details about what’s working and what’s not.
For instance, right now, I've been having pain in my foot and I didn’t think it was a big deal. But my doctor is extremely concerned, so I’m getting an MRI on my foot. This is a good example of something you should track. How long has it been hurting? Has it gotten worse? When did it get worse? Does anything make it feel worse? Better? Things like that. That helps your doctor treat you more effectively.
I always write a list of questions before I go into my medical professional’s office. That way I don’t forget anything. I write down the answers and follow-up questions while I’m there. I find that to be really useful.
It’s important to have a medical professional who suits you. That may mean shopping around if you find yours isn’t a good fit. If you don’t feel like you’re being treated well and listened to, go to another doctor if your health insurance allows.
Have a Backup Plan for Bad Days
I have a backup plan for everything because your symptoms can interrupt your daily life at any time. You can feel well in the morning, and by afternoon or evening, you could be feeling lousy.
I have a trip planned to Costa Rica, and since my medicine hasn’t really been working well, my doctor and I have a backup plan. I have one for work, too. I happen to have a great boss who is very supportive and encouraged me to get a medical accommodation.
Find support from other people with psoriatic arthritis or rheumatoid arthritis, which is very similar. I’m a member of both CreakyJoints.org and Bensfriends.org, and I highly recommend them both. I’ve met lots of people through these sites. When I’ve gone through flare-ups and I’ve been low and depressed, it helps to have people who understand.
I also get support from my friends who don’t have psoriatic arthritis. In the end, despite having lost friends over this disease, I feel like it’s worked out well for me. Now I have the greatest friends, both with and without psoriatic arthritis. I’m surrounded by understanding and supportive people.
Photo Credit: peterschreiber.media / Getty Images
Frances Downey, marketing professional, Federal Communications Commission, Washington, DC.