If you suffer from a chronic illness, what is the hardest part about living with the condition?
I think the hardest part is that other people don't understand what you are going through, and either assume others things and misunderstand you, or they don't care.
I suffer with Willis Ekbom disease, formerly known as Restless Legs syndrome or RLS/WED. The hardest part about living with this chronic disease is the symptoms themselves. The neurological sensations/pain in my case, affect my lower legs, lower arms, jaw and gums. Without treatment in the form of Pramipexole (Mirapex), my life would be very different. For one thing, I would be disabled in terms of employment because I would sleep very little. The sensations are distressing and the only thing that relieves them short of medication, is walking.
The next thing that is hard regarding this disease is that most people misunderstand it. They think it is an involuntary movement of the legs or kicking. The fact is, the moving of the legs and kicking is very voluntary unless I am lucky enough to have fallen asleep. I move my legs to relieve myself of the horrible sensations or pain.
Another difficult part of this disease it the attitude of the general public. The old name, Restless Legs Syndrome, was an unfortunate name. People find it funny. They imagine a person kicking their legs or kicking other people because of involuntary movement of their legs.
Health insurance is another problem. My neurologist and I found a drug that worked better than the one I am now on. We worked with it until we hit the optimum symptom relief. That was reached at 8mg of the medication. The insurance company told us that my symptoms should disappear at 3 or 4 mg. The symptoms didn't disappear, but the new drug and the insurance company sure did.
Thanks for the good question and the opportunity to share about this horrible, but manageable, chronic illness.
My father has CKD, end stage kidney failure and I learned from him that not being able to be cured or normal again ( hopelessness) seems to be the hardest part.
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