“But, you look normal”
It’s NOT a real disease.
It’s all in your head.
You’re too young to ACTUALLY have something wrong with you.
It’s because you’re fat, lose weight and you will be fine.
Every struggle needs support, unfortunately my struggle was one that nobody understood how to support. I have fibromyalgia- otherwise known as the “invisible disease”. Simply said, my body is extremely sensitive, if an able person gets pinched they will say “ouch!” and then within minutes the pain will go away, but for someone with fibromyalgia that pinch will be felt for days or weeks. Fibromyalgia warriors have tender bodies which makes pain our daily partners.
According to the Oxford dictionary, a disability is “A physical or mental condition that limits a person’s movements, senses, or activities”.
Though, in the real world, people assume that disabled people are only those with canes, wheelchairs, or other devices that help them live their daily life. What people don’t realize is that a disability isn’t always apparent on the outside.
When I told my Indian family about my disease they instantly told me that if I lost weight I will be fine, if I don’t think about it the pain will go away, and that it’s all in my head. It made it that much more difficult to explain my daily obstacles. I want to be mad that it took them so long to understand, I want to be mad that they didn’t support me in the ways I needed, but I can’t blame them. I am very fortunate to have gotten diagnosed in the United States where medicine is so advanced that there are doctors that know about fibromyalgia and know how to help. Back home in India, I would have been dismissed as a young adult who has weight gain pain. All I wish is that people were educated about how to deal with disability and what steps they can take to understand.
When I told my friends about this new painful change in my lifestyle, it helped me sort out my real friends. Though it got me many reactions that shocked me.
“But you look normal”
“Why aren’t you on a wheelchair then”
“No offense, but it’s all in your head”
While many of my actual friends and supporters stepped up the right way by adjusting plans, being considerate, listening, and most of all- understanding, I realized that the world, no matter how advanced, isn’t versatile in disability and illness. You can’t make everyone understand your struggle.
Last week, I went to Disneyland with my best friend and while I had the most magical time, I killed my body. I couldn’t walk the next day, but I was too ashamed to delay plans. There was this heavy guilt of letting everyone down if I exposed my stupid pain. Though this was the day I found out how blessed I am, my best friend saw the subtle limps and the terrible acting and got me a wheelchair and pushed me for 6 hours straight. I ended up having the time of my life with Mickey Mouse and Donald Duck.
So what is the point of all this? Why am I complaining about the past?
There are many ways to support someone who opens up to you about their chronic illness; adjusting takes time and effort but there are simple things you can do to start making things easier.
1. Understand when we have to cancel, postpone, or adjust plans
Yes, it is annoying when you are mentally prepared for something and all of a sudden the plans change with little heads up. Understand that as frustrating as it is for you, it is more upsetting for us. We, just like you, are looking forward to a set plan and itinerary that allows us to spend time with you. We have to wake up with excitement just for our minds or bodies to say NOPE! to us. We need you to be flexible. We hate it more than you do.
2. Don’t get annoyed when we ask for details
We want to make sure that the plans are fit for us so that you don’t have to be bothered late on. Whether it is asking about accommodations, how accessible it is, or any of the other thousands of anxious questions we have- it is all because we are trying to make sure we can have fun with you.
3. Educate then help
We have a disease and we want you to learn and understand. Please read and learn before you try to help because chances are, without background knowledge, you’re making it worse. Do not bring your own experience as a justification to your advice. The worst thing you can do is assume you understand without even trying to read into what we go through.
4. You CAN’T cure us
Especially when we have a chronic illness, there is no way you can cure us. Please educate yourselves and we would love to hear about what you learned, but do not tell us about all the diets and retreats that will cure us. When we are first diagnosed, the doctor tells us that it is something that will travel with us for years. We know that it won’t go away, so please do not say that something will cure us because 99.99% chance is that you are wrong and have triggered us. We need you to understand that this disease isn’t going anywhere and we need you to show us that you aren’t going anywhere either. Help us by educating yourself, asking us how we are doing, what we are using as treatment to feel a little better, and ask us what you can do to help.
5. We aren’t faking it, we just can’t control it
Our health is like a rollercoaster. Many times I have had to cancel plans with friends because my body wouldn’t let me do it. I couldn’t drive to the movie theater last night, but the next morning I was okay to ride the train, travel to the city, and walk for a mile. We aren’t faking it! WE CAN’T CONTROL IT! The most hurtful thing that could be said is that we are faking it because in all truthfulness we cannot prove it to you either. One morning we can be a painful wreck, the next day we are able to live a decent day.
The most important thing you can do is listen. We need you to listen, understand the difficulties we face, what is bothering us, and what we need. Not only does this help you understand what you can do for us, but what we tell you can be a greatly beneficial when making plans with us. You know what we like, need, or cannot handle.
We are warriors for dealing with the pain, but we need warriors to be our support system. We need someone who can understand, listen, and help.