To My Dear Friend, Newly Diagnosed with Psoriatic Arthritis
I know you are scared. I know you are in pain and very confused. You are filled with self-doubt and worry. You are frustrated. Maybe you are even angry. Yes, you are all these things, but most importantly, you are not alone. This isn’t a fight you have to take on by yourself. You have an army of warriors waiting to offer support and understanding.
Coming to terms with your new diagnosis
Psoriatic arthritis can be isolating. Don’t let it be. Talk to people and get answers to your questions. Find a support network of like-minded people. Tell your family, tell your friends. Help them to understand your struggles.
Find your own path- This disease, as well as how it manifests itself, responds to medication, and progresses is unique to each person. Some may opt for dietary changes only, some may choose supplements, some may choose biologics, or some may choose a combination of all of the options. The important thing is to do what makes you comfortable. Follow the course of treatment that you believe is right for you.
Do your research- Learn about this disease from reputable, reliable sources. If you don’t understand something, ask questions until you get the answers you need. Be informed about all possible options, side effects, and even costs associated with medications. Learn about the comorbidities so you won’t be caught off guard when something else comes up. Become an expert in the benefits and limitations of your insurance.
Find a trusted rheumatologist- The relationship that you will develop with your rheumatologist is vital. You must feel comfortable voicing your concerns and trust in the experience and expertise that your rheumatologist will provide. If you don’t find this in the first rheumatologist that you come across, then keep looking. Your relationship with your rheumatologist should be be a two-way street of trust.
Don’t be afraid to ask for help- I struggle on a daily basis with this, so perhaps take this advice with a grain of salt. Asking for help doesn’t make you appear weak. People won’t think less of you, and if they do, that’s their problem. There are many assistive devices designed to make living with PsA easier. Find what you need and use it. Let people open jars and bottles. Allow yourself to have help watching the children on tough days.
Learn your limitations- It will take a while to figure out just how hard you can push your body. You will need to learn to rest and plan for time to recuperate from even the simplest tasks sometimes. It will be frustrating but you will learn.
Know that some people may not understand- You may not always get the support and understanding from loved ones that you need. It can be difficult, especially at first for them to come to grips with the “new” you. Oftentimes, because it does not directly affect them, they may forget that you tire easily, get sick easily, or have trouble doing some tasks that you had always easily done in the past. Be patient with them and yourself, this disease is difficult for us to understand and we live with it every day. Imagine how hard it is for people who don’t have that insight.
Be aware of the emotional implications- It is easy, especially at the beginning, to be very focused on the physical pain we feel. We focus on the aching joints or the itchy, painful rash. It is easy to push our feelings out of the way and focus on the physical pain. But be aware, there are many emotional elements to PsA as well. You are at increased risk of depression and anxiety in particular. Feeling overwhelmed by your diagnosis and all it entails can cause depression and anxiety. If it all becomes too much, don’t shove it deeper inside. Talk to someone, a doctor, a trusted friend, or a support group. They can help you work through a lot of the emotions and help you feel less alone.
Most of all
I hate that you are in pain. I hate that you have this disease, and I hate that your life will never be the same again. I won’t offer you false hope, we are too good of friends for that. I can’t promise that everything will be fine, there won’t be hard days, or you won’t feel angry, upset, or lost. But I can promise that you will never be alone. You will have good days. You will be stronger than you think you ever could be. You will be a warrior.