Are You An Expert?
I might not be an expert on my disease but I have become very knowledgeable about it. What does it take to be considered an expert anyway? My doctors always ask my opinion on the drugs that I take and how I feel about certain things.
There is not a day that goes by that I’m not engaging in questions about psoriasis and psoriatic arthritis. I don’t give medical advice, but it seems sometimes I do get asked complicated questions on these diseases.
Questions I am frequently asked as an advocate
- How do I get diagnosed?
- What is psoriasis? Is it contagious?
- Can it spread?
- What are the symptoms?
- What causes psoriasis?
- What is the difference between psoriasis and eczema?
- Can it be controlled with diet?
- Should I see a specialist such as a dermatologist or rheumatologist?
- Can psoriasis be cured?
- Can the sun help me?
- Can my child get psoriasis?
- Is there something I can do if my symptoms worsen?
- Is there a cure?
- How do I stop the itching?
- Do I need medication?
- Can I just used a cream?
- Can I take a pill for this?
- Is there anything natural I can take?
- How long do I take this medication?
- What are my risks?
- Are biologics safe?
- Have they been tested?
- Do I need blood tests?
- Is the drug addictive?
- Will it interact with other medications?
I will never know as much as my doctors, but I know enough to communicate to people what I have learned over the past 55 years. I have done my research, studied and being a patient myself has opened the door to allow myself to learn all I can.
Understanding more about my conditions
There was a time when I didn’t know anything about my disease. I couldn’t even spell it. My knowledge was very limited; as in I had no knowledge. However, over many years, I’m able to communicate about psoriasis and psoriatic arthritis. I think of the many people who are not sure how to get a diagnosis. They don’t even know whether they have psoriasis or not. I have had people tell me over the years that I really know my stuff.
I want to articulate that it’s so important to be a part of a support group or community. My psoriasis has always been bigger than me. I just didn’t know how big it was. As a patient and advocate I must engage in the community with my doctors and pharmacist and fellow patients to learn all I can.
Reflecting on what I’ve learned living with psoriasis and psoriatic arthritis
When I look back over the past 55 years. I was silent about my disease for years. I had nothing to say about it. If I had any unknown symptoms I would just brush it off. When we don’t ask questions that is when we stumble. Communication and speaking is key. When you exemplify expertise on a subject, many call on you for not only questions but answers.
As a patient, I get a lot of challenging questions from time to time. Where is this community you talk about? Is there a cure? My answer is always, I’ve had this disease my entire life and there is no cure, only treatments to manage symptoms for now. People always want to know where psoriasis comes from; I know I got psoriasis as a little girl and it’s an autoimmune disease. As for the community we are everywhere; the more we put awareness out there, the clearer it is for people to understand.
I have made myself available by utilizing my skills on panels, support groups, social media, blogs, Town Hall Meetings and Capitol Hill. I’m not an expert, but I am always in demand because of my knowledge. I’ve even had the opportunity to have my story put into a documentary.
Finding ways to help others by sharing my story
I’m grateful for all the knowledge and the opportunities I have been given over the years. I want to share it with the community because there is such a need for more information on psoriasis and psoriatic arthritis.
Psoriatic disease awareness needs much more work. It needs more experts on the front line. Yes, we have come a long way, but we still need more community involvement. It’s not about me. I speak for the people who can’t speak for themselves.