Why Are Advocacy Efforts Important?
Last updated: August 2018
I’m very active in my community. I meet many people in my walk of life. I attend town hall meetings, visit nursing homes and hospitals. My church family allows me the opportunity to visit places that would not be on my daily radar. I know this is arthritis awareness month so I wanted to highlight psoriatic arthritis.
I went to my local nursing home to visit. I have been going there for years. I’ve never seen anyone there with psoriasis or psoriatic arthritis. I was talking to the staff nurse one day about my disease and she stated that they had a resident there who does have psoriasis and psoriatic arthritis, but she only comes out of her room for meals. I asked if I could see her.
I was not prepared for what I saw. She was covered in psoriasis from head to toe and had a bad case of arthritis. She told me that she had this disease for about 60 years, but doesn’t do anything to take care of herself because she didn’t have insurance that would pay.
I will try and paint a picture as she was telling me her story. She was very bright and had come to the nursing home because her health was failing. She was in her fifties at that time and shocked that older people were acting like children at the nursing home; they would point and stare at her because of her condition. They would talk about her too. Her condition was very noticeable, flakes falling from her scalp and she was experiencing hair loss. She became miserable and her condition became worse because she couldn’t get proper treatment. She became very depressed and basically didn’t want to live anymore.
As a psoriasis advocate I knew I had to do something.
I first started by visiting her as much as I could and writing her letters and giving her words of inspiration. I also gave her literature on different things to do and some tips to make her feel better. I let her know that she had to moisturize often so that her skin wouldn’t get dry. She picked and scratched a lot. I told her that would make it worse. I told her that if she was able to get outside and get a little sun which would help her skin and her joints; and to also stop stressing. I told her that putting hot towels or a hot pack on her achy muscles would relieve some of her stiffness and joint pain. My best line for her is “use it or lose it”. I told her to walk just a little each day to keep the joints flexible and her muscles strong.
"You meet people all the time and when you are empowered to empower someone else it makes all the difference in the world."
I think we should speak out on how our elderly are treated in nursing homes, hospitals or even jails. Is it fair they can’t afford medical care? How about being talked about because of their condition? This is a situation that a lot of us don’t think about.These are the type of things that make advocacy efforts very important to me.
If we don’t speak out, who will?
I just can’t imagine being confined to my room all day. I can’t imagine having no family or friends for support. I can’t imagine my scalp itching so badly and I can’t wash it because I don’t have a dollar. Can you imagine no one coming to see you, ever? Think of the emotional trauma this can cause even the strongest person.
I have been visiting my friend for 3 years now. She is doing much better. I found a teaching hospital that sees her often and a drug company that gives her medication for free. I think when we are able to help somebody who is having a very hard time, we should.
As an advocate for psoriasis and psoriatic arthritis we can make a big impact in the lives of those with this disease. There are so many people with different situations and circumstances and this is why highlighting psoriatic arthritis during arthritis awareness month is important to me.
Are you recently diagnosed with psoriasis?