(Editor’s Note: National Pain Report is pleased to welcome Colleen Sullivan as our newest columnist. As a teenager, Colleen was diagnosed with muscular dystrophy, rheumatoid arthritis, scleroderma, mixed connective tissue disease and other auto immune disorders. Readers may recall Colleen has written about problems she’s had getting prescriptions filled and being humiliated by a pharmacist.)
The thing they don’t tell you when you are first diagnosed with a chronic health condition is that your life will never, ever, be the same.
They tell you what to expect from your disease, and what medications to take and when. They might even tell you how long you have to live. But, they don’t tell you you’re going to be a burden to everyone you love forever. They don’t tell you you’ll spend most of your remaining life at hospitals, pharmacies, doctor’s offices, or at home in bed staring at the ceiling.
The hardest part about being sick forever is you have to be alone a lot. I wish they had told me that. The rest of the world is actually living their lives. They wake up, go to work, and never know how lucky they really are.
You wake up to pain, fatigue, sickness, and depression.
What’s really sad is even if you find someone who understands, you are still a burden and not a healthy partner or friend to them. You will never be. Am I supposed to ask people to just sit by my bed and forget their own life?
I can’t do that. I just can’t do that to someone I care about.
Yes, of course, there are happy times as well. But even in that moment, when you are smiling ear to ear and laughing with your friends, the disease is still there. You are still aware it’s slowly killing you. Sometimes I swear I feel my body destroying itself. It’s like someone from your own army sneaked into your base and blew everything up.
It’s never completely out of my mind.
I guess the million dollar question is how do I keep living a normal life while I have this beast inside me? This monster that attacks silently and has no mercy?
My friends tell me to just “put it out of my mind” or “get out and get a hobby”.
Don’t those people realize I would give anything to be able to have a hobby? Actually, I would love to just be able to wake up like a normal person. Not crying because I am in so much pain. I would be thrilled if I could just take one step without lightning bolts of pain shooting up my legs. Shoot, I would really love just to be able to open up my hand again.
Yes, they don’t tell you how much you’re really going to lose. Maybe they should have. Maybe I could have mentally prepared to lose my life at 17 years old.
I guess the point of this column is to let people know they aren’t the only ones feeling this way. It’s really hard to be diagnosed with a disease, but it’s even harder to live alongside it forever.
I do have to say, if you find the right person, who really cares about you, they will love you for being you.
Colleen Sullivan lives in Florida. She has a Facebook support group for people with chronic health conditions called Someone Like Me.
Colleen’s father has another Facebook group called Patients United for DEA Reform.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.