Testimonial: Anxiety during hospitalizations

Testimonial by Alexie Babin, published in SVB number 45

September 2021

Anxiety in general is not an easy thing to deal with. Add cystic fibrosis, or any other chronic disease, and it can become a mess. You have to manage your medication, go to school even if you don't feel well, you have to miss work and also live with very long and frequent hospitalizations. Sometimes, especially in times of COVID-19, we are not allowed to receive visitors. This can play a big role in the morale and mental health of CF patients. You become used to the four walls of the hospital and when you are admitted, you lose your home routine and stress increases for several reasons.

Personally, I have been hospitalized for 168 days since January 2021; it has been hard to keep my spirits up. At 20, I just want to live a normal life and when I know that I'm missing lots of nice activities with my friends, it's really boring. If you have a job and are hospitalized, you lose your income when some people really need it, which triggers another element that causes anxiety. If you are young, you will miss school. Since the pandemic, it is better for hospitalized patients since many teachers are now comfortable with online courses and with the transfer of documents online, etc.

Children and young adults can spend a long time in the hospital and this can cause anxiety disorders for some. I am often hospitalized for pancreatitis and digestive disorders, which can cause a lot of pain. Pain is a fairly inseparable part of anxiety. Not knowing where the pain is coming from, whether it can be relieved by something or if it is made worse by another.

As an adult, you can verbalize your symptoms in order to get relief from your pain. However, a child does not have this ability and cannot tell exactly where it hurts. As one can imagine, this causes a ball of stress for them, as well as for those around them who do not know how to help the child.

Most people with cystic fibrosis that I know have already had a PICC line in order to receive intravenous antibiotics. The procedure to have it installed is a bit more complex than a normal IV catheter. Its installation is a bit more painful and this happens in a large room in radiology, so not in our business. The pain is not huge, but it is not pleasant. Some say it gets easier over time, which is true, but personally, I always have a little anxiety every time I go to get one installed.

Being in the hospital for long, very difficult periods can cause stress, but there are lots of little tips I'm going to give you to try to reduce that stress. First, bring household items, decorations, blankets, pillows, etc. This will allow you to have a comfort that you already know. Even bringing your own sheets for the bed is a big comfort. Second, bring snacks from home. Whether it's soft bars, chips, little gummies. When you are stressed or want something sweet, it's good to have! Finally, bring books, a computer, anything to change your mind. Personally, I always bring makeup and have fun trying out new “looks” while I have time to spare. Otherwise, I like to write about my days in a small journal, sometimes it can be good to clear my head when you are stressed.

I hope these little tips have given you ideas for relieving your anxiety during future hospitalizations.

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