However, now I am aware of it, and I do feel lead to share some thoughts on my experience living with an "invisible" chronic illness, which is debilitating more often than I'd like to think about.
First, to explain briefly the idea of an "invisible" illness.
Many illnesses, like Lupus, Fibromyalgia, Rheumatoid Arthritis, Dysautonomia, Gastroparesis, Chronic Fatigue Syndrome, and countless others, have severe symptoms that can be life-altering, and even life-threatening, but, externally, the person suffering from the illness may look fine.
For example, even on a really bad day when I get up in severe pain, if I take all of my medication (17 pills in the morning), take a hot shower, stretch, put on "my face", style my hair, and force myself out the door, I probably look okay, other than moving slow.
Because of this, people who do not understand invisible illness tend to think that these illnesses are less serious than they actually are.
For me, at least, dealing with RA has been a beast since the beginning.
Simply having it is unsettling but what is even more troubling is how unpredictable it is.
For example, on my latest treatment, though I still had plenty of areas of pain, including my knees, I thought the burning pain in them that used to bother me so, was gone, as I had not experienced it in some time.
Suddenly, on Saturday, it came back as a searing pain, worse than I've had before.
On Sunday, it was growing stronger and again this morning it seemed to be worsening still.
Needless to say, today was an unscheduled high dose steroid day.
This is in addition to my hands having a mini-flare and my spine hurting at a 6/10 right now and whatever else decides to stage a rebellion this week.
In addition to the pain, RA comes with crippling fatigue. I've never experienced anything like it before. I liken it to literally hitting a wall. When it hits, I cannot go on.
Due to my inability to predict which of my joints will be affected at what time or how severe a flare will be or how long it will last or when overwhelming fatigue will strike, I could receive things like disabled parking and other services for people living with disabilities, but I, like most people, will wait until I absolutely have to utilize those things.
However, there are many people with similar diagnosis who already do have to use those services and often they are judged and treated unkindly because they look "well" though they are quite ill.
Hence, we have Invisible Illness Awareness Week, to educate others by sharing what we actually experience in our day to day lives.
Though it is difficult to deal with chronic illness, I am tremendously blessed. I have a wonderful, supportive husband, a loving family, caring friends, an excellent rheumatologist, and an understanding employer.
Of course I wish this disease wasn't with me but I have faith that God will bring me through it and use it for good somehow.
He always does.
Due to my inability to predict which of my joints will be affected at what time or how severe a flare will be or how long it will last or when overwhelming fatigue will strike, I could receive things like disabled parking and other services for people living with disabilities, but I, like most people, will wait until I absolutely have to utilize those things.
However, there are many people with similar diagnosis who already do have to use those services and often they are judged and treated unkindly because they look "well" though they are quite ill.
Hence, we have Invisible Illness Awareness Week, to educate others by sharing what we actually experience in our day to day lives.
Though it is difficult to deal with chronic illness, I am tremendously blessed. I have a wonderful, supportive husband, a loving family, caring friends, an excellent rheumatologist, and an understanding employer.
Of course I wish this disease wasn't with me but I have faith that God will bring me through it and use it for good somehow.
He always does.
