9 Lessons Learned From Living With Psoriatic Arthritis
Like many people, I was diagnosed first with psoriasis and then psoriatic arthritis. The diseases go hand in hand. My biggest challenge over the years was finding a doctor that believed I had psoriatic arthritis and that I wasn’t being a hypochondriac for 25 years. I have worked diligently with my doctors to understand my psoriatic arthritis and find out what works for me. Knowledge is power. If I had known now what I knew 25 years ago things would have turn out so much differently for me. Here are nine lessons I’ve learned.
You don’t have to suffer in silence
The biggest lesson I have learned is that you don’t have to suffer in silence. I used to feel like I was the only person who was going through this, but I learned that we are not alone. I have met so many people over the years that lived with this disease. They have given me the courage to move on. You need to stop blaming yourself for your disease; there was nothing you could do to stop it. I ran a support group for years. This was one of the most rewarding things that I could have done for myself. I got to share my pain with people who were like me.
Learn to recognize change
When the swelling began in my fingers and toes I knew this would be a life-changing thing for me. I had to find the best doctors and listen to them. Cold packs became my best friend to help for pain and swelling. You can also use heat. Remember that life teaches us lessons over and over again until we get it right. Let’s try to improve things in our life if possible.
You can help others
Helping others has been one of the most rewarding things for me to do. I have tried to make it my mission to not miss meetings or events because of pain. This doesn’t work always, but I try. I believe I have a journey to complete, to learn new things and have a great time doing it. I volunteer as much as possible, even if it’s just visiting nursing homes, which is very rewarding to me. I love to see our elderly smile — just because.
Ask for help
Asking for help was a hard one for me. I thought I could conquer the world alone, but when you get so much pain in your body that you can’t walk, you need someone to help you. Don’t think you’re weak for asking. We are all reluctant to ask for help. We should all ask for help more often. If you don’t ask for help, people will assume that you are ok. There are times you will need help from family and friends.
Find a good doctor
I have been seeing doctors my whole life but it took me 25 years to get diagnosed with psoriatic arthritis. If in your heart you know something is wrong, find a good doctor. Ask lots of questions. Only you have the knowledge about your unique condition. The right doctor will listen to what you have to say and incorporate that information into your treatment.
You are not weak
Having this disease does not make you weak. We are just as strong as everyone else. We just have more pain to deal with. There are days I can’t open a jar or walk up a flight of stairs, but that doesn’t stop me from trying. Make the distinction between being weak and being ill. Even in your illness, you are strong.
Know your body
You can have signs of psoriatic arthritis everywhere, inside and out. I started out with the scaly rashes and the pitting in the nails very early in life. I didn’t get the sausage fingers until later. I started having joint and pain at age 25. It was many years later before it attacked my spine and I started having stiffness. My worst pain now is my shoulders and knees that keep me from doing what I must do. Medications have help a lot. Pay attention to these signs. Know your body.
Having this disease makes you very fatigued and tired. I have learned that I must practice self-care and treat myself gently. Drinking plenty of water and eating well are two things that help me a great deal. I also try to get some exercise, even of it’s a few minutes a day. Don’t try and do everything by yourself. Ask for help. Get plenty of rest and follow your doctor’s orders.
Be your own advocate
Be your number one advocate. Explain to people that you do get tired easily, so there are some things you might not feel like doing right now. Explain that saying no has nothing to do with them. If I talk too much about my disease, I apologize. I just want to be a part of the cure and offer suggestions. Remember, anyone can get it, not just older people. Being your own advocate means going the extra mile to get the right treatment. See a rheumatologist to get the proper diagnosis. He will look for swelling, pain, do X-rays, MRIs to check for joint damage. Ask lots of questions.