5 Ways to Take Charge of Your Disease
For nearly 20 years psoriasis had me in a state of mental solitude. I felt alone, ashamed, and as though no one would understand my condition. I lacked self-esteem, confidence, and love for myself.
In the early 90's, I encountered psoriasis at the age of seven after a bad case of chicken pox triggered my disease. At that age it was very hard for me to comprehend what was happening with my immune system and it was therefore hard for me to explain the inflamed, flaky, patches to others. To avoid questioning, I tried my best to hide my skin at all cost. I have several stories on how I have been mistreated and discriminated against but I also have stories where I conquered my fears of psoriasis and won in the face of adversity with things concerning my disease.
For years I thought the best way to fight my psoriasis was to visit my doctor while hiding my disease and remaining silent about it. I figured if no one knew I had it, things would be easier. I realized this approach was not conducive to my overall wellbeing. Four years ago I started to speak out about my disease and from there I became extremely active with the psoriasis community. After reflecting on my own life and speaking with others, here are five things I learned that have helped me to cope with psoriasis:
1. Find An Online Psoriasis Support Group
The traditional forms of in-person support groups have somewhat become a thing of the past. However, there are a lot of great support groups online for psoriasis sufferers. I joined an online support group back in 2011 and it seriously changed my outlook. For the first time in my life hundreds of others with psoriasis were at my fingertips. Since then I have also joined many support groups on Facebook. I have formed very genuine relationships with many psoriasis sufferers and have met many in person. Finding others is the key to giving you strength to fight your disease.
2. Find An Organization
There are several organizations who dedicate their time and funds only to psoriasis suffers:
- National Psoriasis Foundation (NPF)
- International Federation of Psoriasis Associations (IFPA)
- Psoriasis and Psoriatic Arthritis Alliance (PAPAA)
These organizations do their best to help improve the quality of life of many psoriasis sufferers, whether that’s by funding research, allowing our voices to be heard by stakeholders, or simply giving us advice on how to better manage the disease. I have personally worked with the first two organizations and I am a witness to the great work they do for patients.
3. Join a Walk/Run for Psoriasis
Every year the NPF has walks all over the United States that have raised close to 10-million dollars thus far. These funds help with research to find a cure and a variety of patient initiatives. If you don’t want to start a team or donate money, these walks are a great place to come and meet other people in your community who also have psoriasis. Last year I discovered there were no walks in Atlanta, GA for people with psoriasis. I contacted the NPF and advised that Atlanta would be a great place to have a walk. Since then, we have had two walks raising over $80,000 with more than 450 people in attendance. Check out www.TeamNPF.org to find out more. This is not only a great place to meet with patients, you also have the chance to connect on a personal level with local dermatologists who attend the event. I reconnected with a doctor at my first walk, who is now responsible for clearing my skin by almost 90%.
4. Do Your Homework
Finding the right doctor, is like finding the right mate. You need someone who understands you and gives you the best treatment and your relationship with your doctor should not be any different. I had to shuffle through a number of doctors before I found the right one for me. I would recommend going to a doctor that specializes in psoriasis. Also take a look at online reviews to see what other patients are saying. You should also consider tracking your symptoms with an app like MyPso which you can take with you to your appointment for the Doctor to review. Simply go to iTunes or the Google Play store and search “MyPso”.
5. Tell Your Story
I understand this tip might be a hard one for some, and may seem unattainable. But it’s one of the steps you should take in order to fully accept your disease. Telling my story helped me tremendously in my journey, but I realize everyone does not have to tell their story in the same way. After telling my story I found that a lot of people were dealing with similar body issues, and could relate to my journey. Telling your story doesn’t have to be super complicated; it can be as simple as expressing yourself to family and friends, your doctor or spreading the word on social media. Choose methods that you are comfortable with and empower you the most.
Any suggestions made are not intended to replace the advice of a qualified medical professional. Please consult your healthcare provider prior to making any changes to your treatment, exercise or diet routine.