It Wasn’t The Onion That Made Me Cry

I have had to deal with ignorant people my whole life, especially when it comes to explaining my psoriatic arthritis and psoriasis. My family and friends have been the worst offenders these past 55 years. I have a great career, been and done things that most people dream of doing. Being an advocate has taken me to the end of the road, but I will fight to the end to help find a cure.

When your family doesn't understand

I was helping a family member prepare dinner one evening and telling her that I have been on medications for years, but have noticed that I’m forgetting things and have started having to write down things and use apps in my daily day. It helps me stay on track.

She stated that she notices that I always cancel events and felt I had been ignoring her for years. She accused me of not doing enough to take care of myself. She wanted to know did I still drink soda. If so, this was bad for my health and I didn’t know why I continued to sabotage myself since I was supposed to be this great advocate!

How to handle hurtful comments

She also wanted to know how I could be married all these years and she felt I must be a burden to my husband. I’ve had people say things to me over the years, but this felt like an attack. I asked her, did she see me at all; my inner self and my strength. Did she know the real me and what I stood for? She didn’t feel I had a real sickness. I just walked away in tears. She didn’t understand my disease at all.

I eventually told her there are days I need support whether she understood that or not. I know it’s not feasible for your whole family to understand your illness, especially with my fibromyalgia on top of everything else. I know that certain people can lower your self-esteem and make you feel bad about yourself.

Having a strong support system

But the bottom line for me is; I don’t care what people think. I have a wonderful husband who supports me. He knows as much about my illnesses as I do. This is the person who has been my caregiver, help me make medical choices and has been active in my life every day for 25 years.

I am grateful that I have a community of people who understands this disease and understands me. It’s sad that some people feel I am too much for them. How do you push relatives to the side? This is not easy to do. I refused to let this person keep making me cry.

Things to do to protect yourself

• You need to decide that some people will never change.
• Just be yourself. I won’t stoop to their level.
• Find out what is truly bothering them. Is it really you?
• Know who you are. No one can define you.
• Never let anyone control you; maybe they just don’t know how to support you.
• Be your own best advocate.

How to let go of mean people?

• If anyone continues to belittle you; just leave. They are not good for you anyway.
• Keep positive people in your life; join a support group.
• Have short conversations with them; let them know you don’t have time for negativity.
• Let them know how you feel, and you don’t appreciate what they are saying. Maybe they need to educate themselves first.
• Turn your anger into something positive. Take a walk, sing, dance, just find a way to vent your anger, if you have any.

Trust me, I know it’s hard to explain pain to anyone, especially if “you don’t look sick.” I have lost friends because they thought I just didn’t want to be around them. I have been through some serious health issues but manage to keep a smile on my face. When people see you put together and happy, they think you are faking your illness.

A note to the naysayers

I just want to say to the naysayers. I can’t twist your arm to believe me. I just ask you to stop judging and ridiculing me. Try to educate yourself and learn from someone who has an invisible illness. I do the best I can every day to live life to the fullest.

Before my feet touch the floor every morning, I say a quiet prayer. I pray for waking up; I pray that I’m able to get up and to have little less pain today. I mostly pray that people will be kind to one another. Despite my illness, I don’t let people control my life or allow someone to make me feel bad about how I lived my life.

I have used my disease to help others know that they are not alone on this journey. This is my strength and I will not allow it to get in my way of what I know is out there for me.