Tuesday, May 28, 2019

Julie answers questions about her life with psoriatic disease

For so many years, I've suffered with this invisible illness. There are so many questions that people have asked , either directly or indirectly. And there are a few that I imagine people want to ask. Since I think that many people with invisible illnesses struggle with these types of questions, I thought I would share some of them along with my answers.

I thought you were doing really well, but now you're writing and talking about your psoriatic arthritis a lot more. Are you getting worse?

Yes, I am doing great! But, my great is probably a lot different than you might expect. For me, great doesn't mean that I don't have pain. It simply means that I can manage the pain that I do have. Even on my very best days, I still have pain. It's just something that I now know how to live with.

Why do you choose to share information about your medical conditions publicly?

For me, sharing about my conditions assigns a purpose for having this disease. It allows me to help other people who might be looking for answers for themselves or a loved one. This is how I make margaritas out of lemons. Plus, I've found that people are very understanding, but if you don't give them the opportunity to understand, then they tend to speculate.

I see you doing activities on the weekend and then unable to keep a commitment later. How do you explain that?

I explain it by saying that I deserve to have fun just like anyone else. When I feel good, I take advantage of that opportunity. Unfortunately, I sometimes pay for the fun I have. Sometimes my back hurts or my knees hurt. Or maybe my weekend activity has nothing to do with my inability to keep my commitment.  Some of the most difficult places for me to stand are in warehouse facilities. I go out of my way to avoid shopping in warehouse clubs or Home Depot. It's the concrete floors. They always cause pain. This includes the warehouse at my job. I still do the work, but there are definitely times that I've had to ask someone else to do this for me.

Why don't you cover up your skin so that nobody has to see your psoriasis?

I'm so lucky that my medicine controls my psoriasis so well. Without medication, I'm considered more than 100% covered. That's measured by the number of palm-sized areas of psoriasis, so it isn't that my entire body is covered. At my worst, my hands, face and feet were the only part of my body not affected. It's more painful than anything I could ever imagine. During that time, I covered up everything I could. I always wore long pants and long sleeve shirts, even in the heat of the summer.  My psoriasis isn't so bad now, but even if I was completely covered with psoriasis again, I would not cover my skin to avoid upsetting someone else. I like to think I'm a bit more confident today.

I've seen you park in handicap parking spaces when you look like you feel fine. Aren't you taking that spot from someone who actually needs it?

I'm very sensitive about my use of my handicap parking tag. I hate to use it and I never use it simply for my convenience. Anytime I use this tag, it's because I feel that I need to. One of the symptoms of psoriatic arthritis is severe fatigue. There are times that I honestly don't know if I'll be able to make the walk back out to my car if I've parked too far away. Or, I'm having pain. You're more likely to see me using a handicap parking space if it's raining. That's not because I don't want to get wet. It's because that's when both my pain and my fatigue is at its worst. Still, I try not to use these spaces because I appreciate that I still have the ability to walk. I also recognize that there are many times that other people need these spaces even more than I do. You can feel confident that if I'm in a handicap parking space that I truly need to be there.

Don't you think you'd feel better if you lost some weight?

Probably so. But, weight loss does not reduce symptoms of psoriatic arthritis. It's so easy to blame the patient for their condition, especially when the patient is overweight. There are many reasons that weight loss is a great idea, but it's a misconception that weight is a factor in psoriatic arthritis.

What questions do you have for me? Or, do you have an invisible illness and find that there are questions people often ask you?  I'm always happy to talk about it and (big surprise here) I'm one of my favorite things to talk about. :)

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