Coping with Invisible Disabiities

This week we are privileged to have Amy Wiley as our guest. Amy is in her twenties and has disabilities that are not openly obvious. She shares how she copes with daily life.

Debbie: You have conditions that could be classed as invisible disabilities. Can you tell us about them and how they affect you?

Amy: I have fibromyalgia, orthostatic intolerance, and a vision-related learning disability. Fibromyalgia causes a whole list of problems, and the severity of the symptoms vary from day to day, or even from moment to moment. The biggest issues for me are widespread pain, fatigue, difficulty sleeping, and cognitive problems, also known as brain fog or FibroFog. I am always experiencing some level of pain, fatigue, and sleep disturbances, but they can vary from just annoying to severe enough to bring my life to a stop. I can't stand still for long and have trouble if I sit for long periods of time. Sometimes walking is painful and being out in the cold increases my pain, so I use a disabled parking placard

The FibroFog tends to come and go more than some of the other symptoms. Some days it isn't there much and other days it causes major problems such as having trouble using and understanding language. It can also affect my short term memory and general processing skills.

My Fibro also has other symptoms such as balance problems, joint stiffness, light and sound sensitivities, chemical sensitivities (including the smell of perfume and cleaning products), muscle weakness, and IBS.

Orthostatic intolerance (OI) is basically the cardiovascular system being unable to counteract gravity when in an upright position, (so the brain doesn't have enough blood).In me it causes brain fog, dizziness and balance problems, near fainting, heart palpitations, fatigue, and muscle tremors.

Debbie: How do your friends and family handle your difficulties?

Amy: Once I got my diagnosis, it was easier for my family to know how to help and what to expect. They are very supportive and there's no w ay I could be going through college without them. Both of my sisters have invisible disabilities , so in some ways we truly understand what the others are going through, but it's also frustrating because we'd like to help the others practically, more than we can.

Most of my friends are really supportive too. They are good at listening and encouraging me, but not letting me dwell on the negative. Several of my friends at school are quick to offer help with my rolling backpack, or to get something from another building, or even let me hang on them when my balance is off and I can't stand well. I do have a few friends that still want to know what's wrong and there are a few people that I have to choose whether to walk with them or go by myself, the longer way up a ramp or elevator, but those are minor things. Everyone seems to be very understanding when I can't commit to events, or have to cancel at the last minute because of a flare.

Debbie: Have you ever been in a situation where you've had to ask a stranger for help?

Amy: Not often, but I have had to ask strangers to help me open my combination lock on my locker, or tell me where I can find an elevator or somewhere to lay down. Usually people try to be helpful but often keep looking  at me funny before finally working up the courage to ask why I need to know. 

Debbie: How does the fact that your disabilities are invisible affect life for you?

Amy: People are more likely to expect me to act like a 'normal' person and less likely to make allowances or offer assistance. It's hard for me sometimes because I want to do the polite and helpful things like stacking chairs after a meeting or picking up someone's pen, but some days those little things cause a lot of pain. Of course, most people have no way of knowing that. I'm in my mid twenties, so people expect me to be in the prime of life. I get called on to help move boxes, or go running to another building, or get led to a flight of stairs instead of the elevator. I've had people jump in front of me in line because I had to sit down in a nearby chair while waiting, or give me strange looks when I use the elevator or disabled parking space.

Debbie: What advice would you give people who have invisible disabilities?

Amy: Don't be afraid to ask for assistance when you need it, or to say no when you need to. Don't let yourself feel guilt for the things you can't do or need others to do. Remember that helping others is always a blessing, so that means we can bless our friends by letting them help us. We can help in return with less physical things, like encouraging them and listening. Actively look for ways God is using your difficulties for good, whether that be to grow you in faith, to reach out to others whom you otherwise couldn't touch, or any other myriad of ways.  

Comments

[Tim George]

Amy is in an inspiration to all of us at FaithWriters. I have MS and understand everything she speaks of. Thanks for this interview.