Sikcell: People living with Sickle Cell
We still Hope
Dealing with fear/paranoia about getting really sick?
Hi All,
I just found this website today and had a question: are any of you really fearful of having severe crises, and if so, how do you deal with it?
Let me explain. I am a 23 year old female who recently had a tough year. I was diagnosed with sickle cell at birth, but kept out of the hospital and stayed relatively healthy as a child (probably because my mom is a nurse and she monitored me 24/7!). I had pneumonia and was in the hospital one or two other times with pain crises, but that was about it.
When I went off to college, I was in the hospital three times with acute chest syndrome and other things - it was a shock, but I recovered and was able to identify and stay away from the things that
triggered the crises (flying, swimming, etc).
Last year, I was in the hospital 4 times for a few weeks each time, and my other sickle cell related complications have gotten much worse (avascular necrosis, mild arthritis). Unlike the last times, there were no obvious triggers, and I had been doing the things I usually did to keep myself healthy (eating well, lots of water, folic acid and vitamins, knowing my limits, etc).
It's been almost 6 months since the last time I was in the hospital, and God-willing I will not get sick anytime soon, but I find that I get really paranoid and almost paralyzed with fear about getting sick again. I am able to work 5 days a week, but on weekends I usually just sit at home because I'm afraid of doing too much and getting really sick. I tried exercising a few months ago (nothing too serious, just walking on a treadmill for about 30 minutes), and was in alot of pain afterwards; I haven't gone back to the gym since. It's gotten to the point where all I really do is go to work, go to the grocery store and go out to eat sometimes.
I know that I'm probably being too cautious and paranoid, and that compared to other people with sickle cell I am blessed, but how do I get rid of this nagging fear I always have? I don't know anyone else with sickle cell, and haven't talked to anyone about this, but I figured some of you guys might have some experience with this.
Sorry if this post is too long - just had to get it out there!
I just found this website today and had a question: are any of you really fearful of having severe crises, and if so, how do you deal with it?
Let me explain. I am a 23 year old female who recently had a tough year. I was diagnosed with sickle cell at birth, but kept out of the hospital and stayed relatively healthy as a child (probably because my mom is a nurse and she monitored me 24/7!). I had pneumonia and was in the hospital one or two other times with pain crises, but that was about it.
When I went off to college, I was in the hospital three times with acute chest syndrome and other things - it was a shock, but I recovered and was able to identify and stay away from the things that
triggered the crises (flying, swimming, etc).
Last year, I was in the hospital 4 times for a few weeks each time, and my other sickle cell related complications have gotten much worse (avascular necrosis, mild arthritis). Unlike the last times, there were no obvious triggers, and I had been doing the things I usually did to keep myself healthy (eating well, lots of water, folic acid and vitamins, knowing my limits, etc).
It's been almost 6 months since the last time I was in the hospital, and God-willing I will not get sick anytime soon, but I find that I get really paranoid and almost paralyzed with fear about getting sick again. I am able to work 5 days a week, but on weekends I usually just sit at home because I'm afraid of doing too much and getting really sick. I tried exercising a few months ago (nothing too serious, just walking on a treadmill for about 30 minutes), and was in alot of pain afterwards; I haven't gone back to the gym since. It's gotten to the point where all I really do is go to work, go to the grocery store and go out to eat sometimes.
I know that I'm probably being too cautious and paranoid, and that compared to other people with sickle cell I am blessed, but how do I get rid of this nagging fear I always have? I don't know anyone else with sickle cell, and haven't talked to anyone about this, but I figured some of you guys might have some experience with this.
Sorry if this post is too long - just had to get it out there!
Replies to This Discussion
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Permalink Reply by Ali on
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Hello Dayo,
I am happy that you found this site. I am also fairly new to the site, but not the disease. I am 42 years old. The fear will subside. I noticed that I would be fearful after a recent crisis and once things returned to normal the fear went away. I suggest that you are honest with your close circle of friends. Let them know that you have SCD and that a crisis can strike at any time. If they are compassionate they will learn about the disease and be considerate of your needs. I don't mean that you want them to treat you differently, but you don't want them to push you. I am sorry to hear that walking on the treadmill was too much for you. Walking and yoga are the only forms of exercise that I can handle. I have a small dog that I have to walk twice a day.
So far, I don't think that I have given you any advice on how to get rid of the nagging feeling. You used the word "blessed" which makes me suspect that you are a woman of faith. If yes, I will advise you to trust in the Lord. Find a hobby that can be done indoors and alone if necessary. I love photography and scrapbooking. A hobby might help to get your mind off of your health. Enjoy the good days when you get them.
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Permalink Reply by Lusubilo on
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I understand just what you are going through as i have also had that fear of when the next crisis will strike.
But you have to get your mind off it , distract your mind when it comes up .
It also helps to refuse to get sick when the fear creeps up or when the pain starts .
The bible also says god hasn't given us a spirit of fear but of peace, love and sound mind so think about that and remeber if you dwell too much on what you fear you somehow bring it into reality .... the mind is that powerful.
This is what works for me , hope you find it useful..
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Permalink Reply by Sickle Cell Warrior on
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Ali and Lusibillo are so right.
The fear did subside for me after a while. I used to have panic attacks in addition to a crises...when I was around 18, mainly because I would start thinking about how awful the crises would be. I would hyperventilate and make myself more sick totally freaking out. I think it's a process that one has to go through, until eventually you see it as just another part of you. An ugly part...but it's there nonetheless.
By the way re: exercising, I read somewhere that high impact exercises like the treadmill, running and jumping actually hurt rather than help with sickle cell. Try something else, like yoga, home exercise DVDs, lifting weights or cycling...I use the elliptical, but I break it up, 2 10 minute segments, then do weights and crunches. It's a myth that sicklers can't exercise, you just have to find the right combo for you.
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Permalink Reply by Neise on
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Hello Dayo,
I am 36 years old and I have been suffering with Sickle Cell Crises since the age of 4. I can definitely relate to the fear and paranoia you feel about getting sick. Like you I also have Avascular Necrosis and Arthritis. I have also been diagnosed with Mitral Valve Prolapse which affects my heart, Deep Vein Thrombosis (blood clot) in my groin, Splenomegaly (enlarged spleen) and most recently Interstitial Cystitis which affects my bladder.
I am hospitalized between 6 to 9 times a year sometimes even more. Over the years I have learned how to deal with the sickle cell crises and my paranoia has subsided in regards to that. When I developed these other ailments due to my sickle crises my fears became exacerbated. It sometimes weighs heavy on my heart.
Fortunately, I am a God fearing women and I know He is my strength and my salvation. I do have those moments (especially dealing with the blood clot) that I get really scared and think that any wrong move will instantly take my life, but in those moments I still have to remind myself that My Father God has my life in the palm of His hands and I must remain prayerful and faithful. I am still a VERY BLESSED WOMEN OF GOD!
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Hi Dayo
I have just joined today. I was diagnosed at age 9,im now 27. I was fairly ignorant of what sickle cell was but i began to wonder in time why i was having severe pains. In time I learned what to avoid. I was afraid of falling sick when away from home...I still am.A crisis is unpredictable so i just make sure i always have my meds and pray God help me and he always does.
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