Things you learn when living with chronic disease

Behcets Things you learn while living with chronic disease
Behcets Things you learn while living with chronic disease

It’s a little ambitious for me to write the topic as above, but I could not find a better way to summarize today’s content. I like to pass my time on Pintrest, and the other day while doing so, I came by a page written by someone who has been living with chronic illness for over twenty years. As I continued reading, I was surprised to relate to every struggle she was talking about, mostly because I had assumed that after a few years of living with my diagnosis that I would master how to get by daily life. As so, I decided to write a few things I have learnt on this journey, in hopes that I will somehow help someone.

1. Have you just been diagnosed? Be patient

A common error is expecting the medication to bring immediate relief once one has received a diagnosis. I was a victim of this error myself, but I have learnt that there is no shortcut to relief with chronic illness. Give your body time to respond to the medication. There will also be side effects with the drugs, and it is essential to remember to be patient.

2. Don’t be so hard on yourself

This cannot be said enough! We tend to be hard on ourselves and live life swinging between guilt for not being able to keep up with the craziness of life and resenting ourselves for not having a different life. What I have learnt is that all you can do is what you can. It will take some time to change your life to suit your new existence, so remember to be patient.

3. Make the most of good days when you are feeling a bit energetic

Once in a while, you will wake up feeling like everything has aligned in your favour in the world. You will feel an inkling of energy. Use such a day to do something that means a lot to you. Something that you have not been able to in a while. For example, I use such days to do things my children enjoy and something fun with my husband because I rarely have the energy to do much with them.

4. You will lose friends

It will be a painful realization, but it will happen. You will wear out many friends in your life, and they will leave, or you will walk away after one too many snide comments about your health. I have not yet mastered how to deal with this. I have had friends mock me because I said I was tired or because I couldn’t keep up as expected. Many will say they understand, but the truth is, they are empty words. Take it with grace, and if you are lucky to have just one friend understand and stick on, be grateful and let them know that they are unique. One in a million! 

5. People will not relate to what you go through

One thing that healthy people do not understand is that our disease does not end; neither does it take breaks. There is no such thing as a disease-free day. Most days, the disease steals everything away from you, even sleep or the ability to enjoy/eat a meal you love. So, when they ask how we are feeling or doing, and we answer that we are OK, it is nothing but a face we put on, a role we have grown experts at playing. It is a reality that noone can understand unless they live it. Be forgiving. It is merely human nature.

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