The Importance of Psoriatic Advocacy
I remember years ago when I started advocating for psoriasis and psoriatic arthritis. I had a strong presence on social media. I talked about my journey every single day and what I was going through.
I remember one day someone asking me if I had anything else to talk about outside of my condition.
Why is psoriasis advocacy important?
I advocate hard for my disease to this day. How are we going to learn and teach others if we don’t get the community involved? How are we going to get researchers to take notice of us if we aren’t doing something? How are we going to get lawmakers to give more funding if we sit back and do nothing? Come on people, get with the program.
If you remember back forty and fifty years ago, you never heard the word psoriasis. You can’t turn on a TV anymore without hearing a commercial on psoriasis and psoriatic arthritis.
I want to think that I was part of this process. I’m not only on social media, but I am working behind the scenes too. I have talked to other people who have got this response also that they talk about their disease too much. Really!
Many pieces of the psoriasis puzzle
Unfortunately, people don’t understand what we go through every day. They don’t get it that getting out of bed in the mornings is a chore or taking a bath can take so much out of you. Walking down a flight of stairs gets me over exerted and worn out.
This disease has taken so much away from me. I have said this many times before, I just need you to walk in my shoes for a day. I have had psoriasis for 50 years and psoriatic arthritis for over 25 years. So many people have told me they get it, but I know better; I can’t even get my doctors to get it after all these years.
People think that just because you’re tired that is the jest of it. There are so many more pieces of the puzzle. Yes, we have extreme fatigue, but with me, an added diagnosis of fibromyalgia keeps the party going.
Is psoriatic disease an invisible illness?
I honestly don’t think people believe us when we say we are sick, including some doctors. I had a friend called me a drama queen once. She just didn’t get how much I had lost to this disease. She had no empathy for me.
I talk about this disease because we are long overdue. Everybody is coming out of the woodworks now to speak. I travel when I can, I speak, I spend my days talking to government sub-teams about money for research.
Psoriasis and psoriatic arthritis have been around since the beginning of time. Social media has helped us show out in thousands. Stop getting angry with me for trying to help myself. Just accept me as I am. Do you think I like being fatigued, swollen, or in pain daily?
Staying positive with psoriasis
There are days I must force myself to think positive. I must pray that today will be a good day, despite what I know is ahead of me. I need you to understand that I must stay upbeat every day. I take many medications a day just to stay focused.
One thing I have learned over the years is to forgive people for their remarks. I now know that forgiveness isn’t for the people who hurt us, but it is for us. Do you get it now?
How often do you experience brain fog?