What I Wish I Knew: Advice From Decades of Life with Psoriatic Arthritis
By Lori M.
I was diagnosed with psoriatic arthritis in 2004 – almost 20 years ago now. At the time of the diagnosis, I was shocked, but didn’t really comprehend the magnitude of what this chronic disease meant with regard to my life, my husband’s life, and that of my children.
I had already survived a health scare years earlier and had surgery to remove a tumor behind my right eye that had grown the distance from the optic nerve to the eyeball. With no prior warning until the day everything went blurry, I saw a surgeon, took steroids for two weeks, had surgery, got a titanium plate put in my head, and received the good news the day before Thanksgiving that I didn’t have cancer.
I cheered, hugged my family, and went about life … as usual. I thought I would do the same with psoriatic arthritis. Boy, was I naïve. Boy, was I wrong!
As I reflect back on these past years, I wish I’d done many things differently.
I’m sharing this for the first time publicly in hopes that others can learn from my mistakes.
Here goes-
1. Ask a small group of friends (even 1), to walk with you on this new journey. Tell them you don’t expect them to solve your problems, just be there for love, support, a listening ear, and a shoulder to cry on. This group may change over the years as people move and relationships change, but be sure and replenish, as you always need someone you can be totally honest with – other than your spouse/partner and kids.
2. Have open, honest, and frequent discussions with your spouse/partner about how you’re feeling physically and emotionally and ask him to share as well. Chronic diseases affect the spouse/partner just as much as they do the patient. Don’t be afraid to seek professional help early vs. later as the relationship will definitely change, probably many times over the years.
3. Don’t be afraid to ask for help when you really need it. Friends and family often feel helpless and want to support you and your family, yet aren’t sure what to do. If you’re having a bad flare, bad week, bad …, make a phone call. Grocery shopping, babysitting, or a cooked meal are all activities a friend will gladly do if they know it’s needed. Give others the opportunity to support you in a tangible and meaningful way.
4. Try to exercise as often as possible, even when you don’t feel like it. A simple stroll to the mailbox or a walk around the block in the fresh air can change your view of the day.
5. Don’t let the disease define who you are, but embrace the fact that it is a part of you. This is easier said than done!
6. Be thankful and grateful for every day, but especially recognize and embrace the good ones. Don’t take them for granted. Celebrate by doing something special – bake a cake, take your children to the park, surprise your husband.
Make it a great day for everyone in your life!
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