When Family and Friends Have a Chronic Illness — Part Four

August 28, 2013
What can you do to support a friend or family member who has a chronic illness?

 

This is the last of four posts on a relationship I had with Ivajoy, a friend and colleague who is now 84 and totally blind. The posts are designed to show you the various phases that a relationship goes through when one of the people develops a chronic, challenging illness.If you have not read the first post in the series, I think you will get most from this post if you first read Part One, Part Two, and Part Three.

MAKING A COMMITMENT TO SUPPORT SOMEONE WITH A CHRONIC PROBLEM

Bouquet of peoniesI had no idea that I would become so important to Ivajoy’s well-being when I was driving her back to her house after a memorial service for Olive. That was when she said she would really miss her faithful friend checking up on her. Well, I said, I can call you. I may even have said “every day.” I can almost remember what part of the freeway we were driving when I said it.

What I meant was that I would talk for five minutes to let her know that someone was thinking of her. Although she didn’t expect me to read long books as Olive had for two or three hours a day, I think she expected me to talk for longer than five minutes.

Gradually, realizing how important the calls were to her, I aimed for 30 minutes, which is about the most time I have to spare, though I may go over if there is a book or article that is particularly interesting to me.

I will read her newspaper stories, articles from Psychotherapy Networker, and books like Bill Bryson’s A Short History of Nearly Everything and Wild by Cheryl Strayed. I will sometimes put a TED lecture on my computer, turn up the volume, and let her listen.

I also read her whatever I am writing at the time. For example, when I wrote the first draft of How to Love a Perfectionist Without Going Crazy, she said that it was fragmented. She was right! I rewrote the whole thing and am much happier with the results. (You can get a free copy from Support4Change or buy the Kindle version for 99 cents.)

Do I wish I didn’t feel obligated to call her? Sometimes I do, when my life is pulling me in several directions at once. So why do I continue doing it?

Partly it is because it feels good to know I am important to someone and can give what no one else in her life seems capable or willing to do. Also I would hope someone would help me if I were in a difficult situation.

I am clear that it is my choice and not her demand that I take time for her. And I feel free to say, “I don’t have much time tonight but I just wanted to call and say hello.” She also will say, “I’m tired tonight. Do you mind if we don’t talk?”

WE ARE WHO WE ARE NO MATTER WHAT WE’RE GOING THROUGH

Ivajoy is absolutely focused on her lack of sight. For example, I always begin my calls by saying, “How are you today?” Not infrequently, she will respond with, “I’m still blind. I’m still blind.”

I believe that blindness is a problem for her more than it might be for someone else because she lacks a sense of spatial relationships and is claustrophobic.

Even when she had no sight in her left eye, she could parallel park. Then, when she began losing sight in the right eye, she could still get around her house by seeing light and dark shapes. With complete blindness, she has a serious disability. Counting the number of steps from chair to sofa doesn’t seem to register in her brain.

As with many people, she is uncomfortable in elevators and starts to panic. Being a therapist and hypnotist doesn’t stop her amygdala from going into overdrive when she has to use an elevator or have her head strapped down for an MRI. Knowing intellectually that her emotional brain is over-reacting doesn’t make it easier.

Consequently, she will start to panic when she doesn’t know where her helper is. When you’ve been independent all your life, it can be more than a little disquieting to have to count on help from others in a world in which you can’t find your way around.

Watching Ivajoy’s reaction to the gradual closing down of the sighted world has made it a little easier to understand why she has tried several experimental treatments with no guarantee they would help. Each time, afterwards, she complains of the pain and the disappointment that it didn’t work.

Who am I to say that she shouldn’t have put herself through those treatments? I don’t think I would, but I’m not the one who is forced to live in her world.

WHAT DO YOU DO WHEN YOU DON’T WANT TO BE UPSET BY SOMEONE ELSE’S UPSET

I often think about a statement I read several years ago that said, “Don’t upset me with your upset.” In other words, life would be easier — for us — if other people wouldn’t tell us their problems, especially when there is nothing we can do about it.

Of course, others may want advice. They may even take it, which would certainly relieve us from having to hear about their problem anymore.

However, from my experience, people mostly want others to know they are suffering so that they won’t feel so alone. When we tell another person about our problem, a bit of the weight of that problem is lifted from our shoulders.

Consider this quotation by Henri Nouwen, a Dutch-born Catholic priest who has authored forty books about spirituality.

“When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.”

If I could give her a better sense spatial relationships, I would. If I could relieve her claustrophobia, I would. Since I can’t in either case, I simply accept her as she is and am sorry that she feels she can’t get out of the hole in which she finds herself.

ENCOURAGE SOMEONE’S INTENTION TO ACCEPT HERSELF WHEN SHE HAS A HARD TIME WITH LIFE

Ivajoy has read (and has had read to her) many books on religion, metaphysics and spirituality. She knows that acceptance brings peace, but sometimes that is easier said than done. So periodically I have to remind her that she wants to live from a calm center of acceptance.

For example, the other day she was feeling particularly anxious about an upcoming meeting with some relatives who don’t come to visit, but were interested in knowing what she planned to do with her estate. I could see the black cloud of despair descending on her.

So I said something like this: When you get into this state of anxiety, I think it’s as though you have a little dark character all wrapped up in a rough black robe [what we would call a subpersonality in psychosynthesis]. He sits on your left shoulder and constantly reminds you that you can’t see. However, on your right shoulder is a beautiful wise woman dressed in a silk robe and she says that you can handle this even though you can’t see. If you need to remember her, ask your helper to come and stand behind you and put her hand gently on your right shoulder.

After I made this suggestion, her voice had more confidence and strength. I don’t know how much this will help in the future, but it reduced her anxiety and gave her the resolve to remain calm when the relatives came to visit. When that meeting was over, she declared it was a success.

However, remember that there is a fine line between two types of encouragement. One encourages the best from another person and is open to whatever that person is able to do. The other pushes the one with a chronic condition so hard that they feel you will be disappointed in them if they don’t rally the way they think you think they “should.”

SUGGESTIONS FOR SUPPORTING SOMEONE WITH A CHRONIC ILLNESS

Here are a few suggestions for what you can do if a family member or friend has a chronic illness.

  1. Don’t feel you need to give as much time as I have! Almost everyone would find my commitment overwhelming. Mine is a special case, but there is always something you can do to make a difference.
  2. Call once a week or once a month. Don’t feel you need to talk a long time. Just the fact that you call is a significant factor in having someone feel connected with the larger world. And to make certain you do call, write down your intention to call on your calendar.
  3. Write a letter or send a card. Again, this may be easier to do if you write a note on your calendar as a reminder. Life speeds by so rapidly that it can be several weeks before you realize it’s been a long time since you wrote.
  4. Send an email. I don’t think it is as personal as a card that you take the time to choose, but at least you did think of your friend.
  5. Tell her that you would like to help but need a suggestion from her as to what that would be.
  6. Be sensitive to the fact that she may not have enough energy for a long visit but would appreciate you coming by for a few minutes.
  7. Invite her out for a meal. It could be a big pick-me-up.
  8. If she isn’t able to go to a restaurant and making something yourself would be too much, you can always stop by a restaurant and buy a special dish that you know she would like.
  9. Don’t be offended if you want to come and she doesn’t have the energy for it, just the fact that you made the effort can be a significant boost to her feelings.
  10. Don’t tell the friend that you know what she is going through. You don’t. For example, you don’t know what it would be like to be blind. You can close your eyes or put on a blindfold. However, you know that you can return to seeing again. It’s not the same as knowing you won’t ever see again. The same is true of almost any illness. Accept that the other person has her own experience and listen to what she says without judging that she is doing it “wrong.”
  11. Always remember that while we bring our weaknesses to every new situation, we also bring our strengths. Help your friend find those resources when she forgets she has them.
  12. There may come a time when you can no longer be there for a person you thought you would always support. If you were expecting to do more than you are able to do, send her your love and best wishes and plan to reconnect when you are able to do more in the future.

I will end with this thought: Illness can make us stronger, and often does. But illnesses can also throw us back to the vulnerable feelings we had as a child. So accept your friend as she is. Don’t be disappointed if she doesn’t have the ability to handle her situation the same way you would.

If you accept her just as she is, she may surprise you and be able to draw upon her inner resources because you aren’t demanding she be someone else.

Did you enjoy this post?
Here are a some related posts from this blog, and articles from the Support4Change website:

 

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