Four Things About Chronic Illness My Family Needed To Know
guest post by Anita Wilson
I am not the only one suffering from migraine. My family also suffers with me. In addition to episodic migraines, 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.
It took time to develop skills. My family has had to adjust their expectations for what I can and cannot do, in a similar way I have had to adjust what I expect for myself.
- 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.
- I need help, but I don’t like asking for it.
- 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.
- 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 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 that 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.”
- 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 sometimes just come and sit in the room with me. We don’t even need to have conversation. Just their presence is enough to soothe feelings of loneliness.
There are also things I needed to learn about my family to increase my skills at caring for my caregivers. 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.
Alias In Town aka Anita Wilson
Alias In Town is an anagram of the author’s name. In every town there are alias people living with chronic illness, addiction and depression. Alias In Town is one of those people. She writes for them because she has learned multiple coping and life strategies to be Well.
“I am more than my body. I am body, mind and spirit. My body is simply the weakest unit of the triad. Though chronic illness affects the entire triad, I have made considerable effort to strengthen my mind and spirit to find the balance of ‘Well’. – book excerpt from Well – A Memoir
Her style of writing is to create art journals She utilizes short essays to tell her story in words. She creates original artwork to tell her story through the end of a brush. She includes personal journal entries to remain open, honest and raw in her writing.