What I Wish People Understood About Disability and Chronic Pain

There is nothing wrong with having a disability. I know because I have one. I have arthritis all over my body, I also have fibromyalgia and chronic fatigue and I am not ashamed of it. It is what it is, I can’t do anything about it, so why stress and worry about it?

• What is Fibromyalgia?
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Yes it gets hard — really hard — but it is my life and instead of getting depressed, I just get on with things the best I can. Some days are a lot harder than other days. I am determined to not let it get the best of me.

In my experience, people with disabilities tend to be a lot stronger than people think we are. These conditions bring out the best and worst in people, but many will work so hard to get some “normal” into their life and fight with every part of them.

I know some people look at us and feel sorry for us. I don’t want people to feel sorry for me; I just want them to understand what it is like to not have control of your own body, and live with pain that can’t be stopped by medication.

There are so many of us around the world, and we need to be listened to, shown respect, understood and not treated differently. We are everyday people who just happen to have disabilities and may need help with things. We can’t always find work or we may not be able to work for different reasons. We all have different levels of disability; some you can see and some you can’t see unless we are having a bad relapse or a bad day.

People need to start noticing those who are invisible and not think they are just parking in the disability parking spaces just to be closer. People can have a great day when walking and getting around is a lot easier, and then there are days were we can barely walk, get around or even get out of bed. I urge you all to stop and think before you decide to write a horrible note accusing them of doing the wrong thing. You never know any person’s circumstance by appearance alone.

Those who do not want to work and fake illnesses make it harder for us who need to get disability. We would much prefer to be looking for work and out there doing things everyday people do. Please stop making it hard for those of us who genuinely need the help and assistance.

I don’t think people who haven’t experienced it can understand what it is actually like inside the body of someone who has an autoimmune disease. My pain is unbearable at times; I can succumb to any infection, flu, cold and take months or weeks to overcome something that should be a week–long illness. My experiences include losing grip on objects and dropping things, stiffness all over, hip and back going out or into a spasm that can paralyze me from my hip down on one side or both legs from the pelvic area. I deal with loss of concentration, weakness, lack of sleep or constantly sleeping and being tired. Even just doing simple house chores is hard; my back starts hurting very quickly when trying to clean my room and make my bed. What should be simple tasks are not so easy for me or a lot of other people.

I personally take at least a month to overcome any cold or flu, and a simple stomach bug can pull all my muscles and make it near impossible to stand up longer than a few minutes. I will not go into full detail, but it does make having a stomach bug incredibly hard to deal with. Even when showering I end up laying on the floor because it’s hard to  stand up and shower.

I have one person who can massage me; as I need it gentle I can’t go to just anyone to get a massage. I am not allowed to see a chiropractor, physiotherapy doesn’t really work, and I have tried Bowen therapy but it made my back go into spasm and I struggled to walk or straighten my back.

Please understand this next time you come across someone with a disability, and give them a chance. If you know someone with a condition, try to understand the condition and know how hard it can be for them to function like you do.

I have to thank my parents for being so supportive. I know they don’t always understand my condition or what I am feeling at that time, but they do give me some extra support and they are there for me when things get really bad and I need some help. You always need a good support system. If you do need help, don’t be afraid to ask for it.

Thinkstock photo by Annuker.