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An Hour in My Life With Rheumatoid Arthritis

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Imagine waking up and reaching for your phone to check the time. Only you knock the phone to the floor because your hand doesn’t open. The joints are stuck. So you start trying to move the joints enough to get your hand open. After a few minutes you can at least awkwardly pick the phone up. Swiping is going to take at least another 10 minutes so you leave the phone for the moment. Imagine the frustration when even the simplest of tasks isn’t simple.

Imagine stepping out of bed and you can’t feel the floor. All you can feel is the burning barbed wire in the joints in your feet as they take your weight. Then you stumble into the wall because those same joints are stuck, too. Imagine that you really need to pee so you resign yourself to crawling on your knees and elbows to bathroom because it’s quicker and less painful than trying to walk. Imagine the indignity of it.

Imagine finally getting the joints moving enough so you can get dressed. You don’t buy clothes with buttons anymore because they hurt too much to do up and sometimes you couldn’t do up a button even if you wanted too. Imagine not bothering with makeup because you can’t grasp the smaller brushes or liners. Imagine putting on a pair of joggers yet again because you can’t handle the pain of wearing even low heels these days. Imagine feeling like less of a woman because of this.

Imagine that you look at your schedule for the week. Yet again you have blood tests to do. The lady at the blood test place knows you by name you go so often. Then you have the specialist appointment. Physical therapy. Need to stop at the pharmacy to fill another script for a medication which may or may not help. You look at your bank account and work out how much the rheumatoid arthritis will cost you this week. You watch another couple of hundred dollars disappear from the money you put away for a holiday. You wonder what will happen when that money runs out. You wonder what holiday you would have gone on if you were well. Imagine how depressing it is when every week you have to spend time and money looking after an illness you never wanted in the first place.

Imagine that you sit down for breakfast. You don’t have an appetite due to your liver not working properly but you need to have food with your medication. You count out the 8 tablets you need to take this morning. You fight a mental battle around the pain killers. The need for pain relief vs the need to protect your liver and kidneys from further damage. You resign yourself to going without. You read through the information your specialist sent you on a new clinical trial. Some medication that might be more effective than the last one. You feel your hope rising until you read the long list of possible side effects. On the TV, an ad comes on about the latest “breakthrough” for arthritis. You watch in hope but it’s nothing new. Imagine the endless cycle of hope and hopelessness an incurable disease brings.

Imagine your baby son starts crying so you go to pick him up. Your left wrist explodes in pain as you lift him and you force yourself to hang on tighter so you don’t drop him. You look into his eyes and pray that they find a cure so he never has to know what it’s like to live in pain. Imagine the fear and guilt of knowing your child could develop RA too for no more reason than they have your genetics.

Imagine you are the only person your age you know who has rheumatoid arthritis. Imagine how isolating that is. Imagine trying to explain what you live with and only getting blank stares in return. Imagine the pressure to be OK even when you aren’t.

Imagine that the above represents one hour of your life. Now you just need to do this for the rest of your life.

Originally published: August 29, 2016
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