Lana Barhum is a legal assistant, patient advocate, freelance writer, blogger, and single parent. She has lived with rheumatoid arthritis and fibromyalgia since 2008 and uses her experiences to share expert advice on living successfully with chronic illness.
Chronic illnesses are debilitating and strike people of all ages. Loved ones are confused on how to offer help and support while chronically ill individuals struggle with sharing feelings. There are many things a chronically ill person wants their loved ones to know but are hesitant to share.
Here are nine things chronically ill people want their loved ones to know:
1. Our grief is ongoing.
Angie, age 17: “I wish my parents understood that my grief over my health is recurring. It is gone sometimes, but it always returns.”
Before getting sick, you don’t know the ongoing struggles that force you to continually grieve. And there is a lot to grieve over. You are not as productive as you once were. You have lost friends, the ability to take part in your favorite activities, and your independence. Grief comes in waves and sometimes, out of the blue. One minute, you are accepting the changes and challenges that chronic illness brings to your life, and the next, you are overcome with sadness or anger.
2. We think we let you down.
John, age 29: “I am confused when my wife says I am not letting her down even though I feel like I am. She hates that I keep apologizing.”
Chronically ill people often have to cancel plans or are unable to follow through on promises. Even though your loved ones tell you that they understand, you still feel bad. Chronically ill people also feel they have to apologize for being sick and in pain even though they have been told it is not necessary. Apologizing helps them explain that they are just as upset about their inability to participate and follow though and that dealing with illness isn’t easy or fun for them either.
3. Our moods change.
Shirley, age 54: “I wish my family understood my mood swings due to arthritis pain.”
Being sick and in pain is an individual experience, and people with chronic illness and pain suffer emotionally in addition to their physical symptoms. Emotions can range from anger and grief to feeling shut down, sadness, and depression. Someone can be kind and loving one minute and the next be bitter and cold. This is because physical illness and pain take a toll on the mind, spirit, and body. Moreover, they affect the ability to work, maintain friendships, and be active.
4. We fear getting worse.
Shirley: “I am confused about how much worse I will get.”
Chronic illness imposes a burden on everyone involved, but it is even more difficult for the sick person. There are years of health worries ahead for chronically ill people. They worry about worsening symptoms and pain, activity restrictions, and if they will be able to support themselves. Mostly, they worry about being a burden on their loved ones.
5. It is hard to communicate feelings.
Rob, age 67: “I wish I could communicate how confused I get when I can’t do the things I want anymore.”
People who live with illness, pain, and the loss of independence often struggle to find the necessary words to describe how they are feeling. Sometimes, they don’t feel comfortable talking about emotional and physical symptoms, and other times, they just simply want to be left alone. These obstacles are frustrating for all parties involved, but when there is much you can no longer do, there are plenty of times when you just don’t know how to talk about it—nor do you want to.
6. We are confused about the future.
Angie: “I wish I could share with my family that I am confused about the kind of future I will have.”
Life with chronic illness is unpredictable and uncertain, and you often wonder what kind of future you will have. Our calendars are dictated by doctors’ visits and treatments. We often have to cancel plans, and sometimes we are just too tired to be productive. We live day-to-day and sometimes, hour-to-hour. The future is uncertain, and that is confusing and scary.
7. We worry about you because we need you.
Rob: “I wish my spouse understood how afraid I get when she comes home late without calling. I'm pretty dependent on her due to the extent of my disability. When she doesn't show up on time, I start worrying and realize how much I rely on her and how I couldn't make it without her. She just thinks I'm trying to be controlling.”
We need our loved ones more than they know. Living with illness and pain is devastating, and it makes a person feel helpless. Because we have little control of our physical symptoms, we are not always in control of our responses and reactions. We worry more than most people do about our loved ones because our lives would be harder without them.
8. We are grateful.
Rob: “I want my wife to know how grateful I am that she stepped up to the plate and took over the tasks I can no longer do.”
Jane, age 67: “I am grateful for every day I wake up.”
Angie: “I appreciate my family’s love, support, and understanding.”
Being chronically ill does make life difficult, but it is still possible to be grateful for all the good things and people in your life. Because living with illness and pain gives you a different perceptive, you can find gratitude in the simplest of things. You are grateful when your body isn’t rebelling against you. You are grateful for your ability to be well enough to spend time outdoors, with a friend or loved one, or reading a book. Mostly, chronic illness makes you grateful for the people in your life that step up when you need them most.
9. We are hopeful.
Pam, age 42: “I wish my family would see that I am hopeful and confident despite being sick and in pain.”
Living with illness and pain can be challenging, but being hopeful helps you make the best out of your situation. Without hope, it's difficult to deal with tough times and overcome challenges. But, hope helps us deal with our doubts and our fears and feel confident about the future. And yes, we can’t always have positive attitudes, but we still push on and preserve.
10. Some things are harder to share.
We appreciate our loved ones and all they do for us. We find comfort in the choices they make to educate themselves about our illnesses, how much they support us, and that they take care of us. But there will always be things that are harder to share with them.