My Support Group
I remember when I started coming out of my shell. It was 12 years ago. I went to a psoriasis event and I asked the question, what can I do to help? I was told at that time that I had a voice and should use it. So I pondered on it for a while and said, “Why you don’t start a support group?” I didn’t know where to start or what to do. I ran an ad in one of our free newspapers that simply said, psoriasis support group meeting. I had 32 people to show up at the first meeting. I was scared to death, didn’t haven’t a clue what to do or say. I didn’t even have a bottle of water to offer. I was not prepared.
It is a known fact that over 7.5 million people have psoriasis. The one thing that I have learned in the past years is that there are people walking around with this disease not knowing what they have or what to do about it. They are suffering in silence. My goal is to educate the community.
An important start
I have always known I had psoriasis, but there are people who don’t. My cause in this life is to help those who can’t help themselves and educate others. I have come across many people who think they have a fungus and buy fungus cream to put on their psoriasis. When you know better, you do better.
If you want to start a support group, ask yourself why do you want to do this? I did it to help others like me. I know I can’t help everyone, but I will try. I want to help people take some control over their psoriasis and psoriatic arthritis.
Planning it out
Support group meetings are confidential. Make your ground rules very clear from the beginning. What is shared here stays here. Find out if there is a need for a support group. For me, just knowing that one person had this disease was enough for me. I knew that this was a long-term goal. There are so many people out there that need support.
You need to decide how often your group will meet. We would meet once a month. I know of some support groups that meet weekly. Make sure you set up an emergency plan if you can’t attend, but want the meeting to go on. You want to have a person that can be a contact person in between meetings.
Find a place to meet. I would meet at the library and community centers. Try to find free places with chairs and plenty of space. I would also provide light snacks and refreshments. On several occasions, I have had speakers to attend. This usually brings in a larger crowd.
Find someone to work with that has the same passion as you do. They can help you to advertise. I would run ads in our local newspaper and do flyers. Make sure to add your name, phone number and where the meeting will take place.
Be a resource to others
Through my support group, I have been able to work with dermatologists who give samples to patients in need and see them. We have so many people who don’t have insurance in this country. I help find organizations that will help with medications and co-pays.
Keep your support group members information up to date. Have everyone sign a contact sheet at each meeting. Send out notification about the meeting in advance, and then a follow-up letter or email.
At your meeting you will meet someone who needs that extra care, make a daily phone call; send a note or prayer. These things are very helpful to a person who is depressed and doesn’t know where to turn.
You need to have a well-balanced, structured support group. You want to provide support and healing for the people that attend. I always let people know that this is a safe place to show your emotions and not be judged.
Over the years I have been an active advocate for psoriasis and psoriatic arthritis, speaking up and out about this disease.
Do you get frustrated with your psoriasis treatment plan?