Challenges of Being a Psoriasis Advocate
Last updated: September 2020
I love what I do. Being a psoriasis advocate is liberating, fulfilling, and ultimately life-changing, but it can come with its challenges. Here is a glimpse into the challenges I face being a patient advocate and how I overcome them. If you are an advocate or would like to do so, I hope you can learn something through my transparency.
As an advocate most times you make yourself accessible to everyone. A lot of us in the advocacy world have a great deal of empathy to share with others. The main objective of our work is to promote understanding and to fight for the rights of those living with chronic illnesses. Many of us sacrifice our own feelings and needs to be an ally for individuals fighting with diseases. This leaves many of us very open to being drained of emotional and mental energy. We also tend to put others first and neglect our own self-care. If you can relate check out the following tips to help care for your emotional and mental health as an advocate.
Ways to manage the stress of being a psoriasis advocate
If you start to feel overwhelmed with the work and the emotions of others, it's ok to take a break. You don't have to feel guilty. The work will still be there when you get back and you can't give it your all if you are not at your best. If you are on social media, just let your followers know you need rest.
I have learned a variety of ways to cope with other advocates. Some suggest creating a cut off time during the day where you dedicate time to rest and not deal with serious issues. One advocate advised she stops at 7 pm and doesn't start again until the next day.
Find someone to confide in
Many of us are the people that others come to when they are having trouble. But where can we go when we need someone to talk to? For myself personally, I find it hard to confide in others because I always feel I need to be there for someone. Make it your goal to find a trusted person that YOU can go to when you need help! It's imperative to your mental and emotional health.
When I first started my advocacy work it was hard to determine what I should and shouldn't share. Some of these thoughts were due to the embarrassment of living with a disease like psoriasis. I felt ok sharing my struggles to other people living with the condition, because they understood and could relate. But it was a lot more difficult finding the courage to share it with the general population. I remember the first time I posted a picture of my arms online. After a few minutes anxiety came over me. I kept thinking about what others thought when they seen my scaly, dry, patches for the first time. 7 years later and I still feel these same sentiments, but I realize in order to shed light on what it's like to live with this disease I have to be open to some things that make me feel uncomfortable.
Remember, you will receive a lot more love than hate
Luckily I haven't run into anyone rude in regards to my condition online (knock on wood). But I only share content on my personal pages where they are well monitored unlike, lets say, the video comments on Youtube which is open to everyone to see and comment. If you happen to come across "haters" please realize there are many other people who NEED what you are putting out into the atmosphere. Don't be discouraged by mean people. Their hurtfulness speaks to their lack of empathy and compassion, and that's a personal problem for them!
Have someone monitor your comments
I'm really sensitive, and I see the mean and heartless words placed under the comment sections on many platforms. This is one of the reasons I've been slow on starting a Youtube channel. If you have this fear, I suggest having a friend or family member to look at comments on your behalf and delete anything that is hurtful before you see it. It may seem like it's doing too much, but the wrong comment can trigger depression and sadness if you aren't careful. Your mental health is worth the work.
Does your psoriasis management change with the seasons?