4 Things About Chronic Illness Every Family Must Know
I am not the only one suffering from chronic illness. My family also suffers with me. In addition to episodic vertigo, I have significant issues with balance, and I have had many traumatic falls and injuries. The people closest to me feel my pain.
I have learned how to adapt my lifestyle around my disease, and the changes I've had to make significantly impact our relationships. My family is genuinely supportive of me, and I am very blessed. However, it hasn’t come naturally.
1. I cannot fully participate in all family functions.
A chronic illness will limit your capacity to live life as you once did. I am profoundly struck by how much the simple routines of everyday impact me. It takes a unit of energy from me to accomplish even the simplest of daily tasks, such as taking a bath or getting dressed. I have a specific number of units of energy for the day, and when they are gone, I am done for the day.
I am a whole person in spite of my illness. I cannot participate in all family functions. I am not inadequate, unreliable or undependable. I am incapable. This is just a simple fact of my life. Accepting this as fact, frees me and my family of the emotional baggage that could happen when having to decline an invitation or cancel at the last minute.
2. I need help, but I don’t like asking for it.
I need help. It is an act of self care to ask for help, but I don’t like asking for it. I have many negative thoughts associated with asking for help.
I should not need help.
I did not used to need help with this.
I will be a burden if I ask for help.
People will tire of me asking for help.
I will lose my independence if I ask for help.
My family has learned to offer help without my asking for it, and I have learned that when they ask, “Do you need help?” it is safe for me to say “yes” regardless of the silly thoughts in my head.
3. Frustration is normal for me, and you don't need to solve it for me.
“Frustration is my constant companion. I have to accept this as a fact of my illness. I am going to be fed-up sometimes. I am going to be sick of being sick. I am going to have bad days. I have adopted the attitude, ‘This too shall pass.’ However, there are days when my frustration is at maximum, and I am just angry and/or sad.” ~ excerpt from my book Well - A Memoir.
When frustration sets in, my family has learned to be supportive yet not try to solve the problem. I don’t need to hear, “You could do xyz to feel better.” I need a hug and to hear, “I hear you and understand you have reason to be frustrated.”
4. I have the tendency to isolate myself, and this is not healthy for me.
I can make myself lonely by isolating myself. This is an area I am struggling in. I am trying to make it a discipline to reach out to others and get out of the house more, but I find it very difficult. My family has learned that this tendency is very unhealthy for me, and they will reach out to me. Most of us live in different states now but we remain in contact, and it is so important. Their presence, even if it is virtual, helps to soothe feelings of loneliness.
There are also things I needed to learn about my family to increase my skills at caring for them. First, this is not a mutual give and take relationship. It is a mutual give and give relationship. Next, it is not easy for a family to know how to support the person they love, but they genuinely want to do it and do it right. Finally, it takes a great deal of energy to be a caregiver, and my family deserves my gratitude and respect for their sacrifices.
Over time, we have learned a lot about each other. Being patient in the process of learning each others’ needs has enriched and strengthened our relationships. It has taken time, but it is time well invested.