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Friday, May 17, 2013

Advice for Caregivers Who Witness Loved Ones Suffering from Gastroparesis

I have given this a lot of thought over the past week. I know that when I'm at my worst and cry, it's hard for my husband to hold me and just feel so helpless because it's not something he can help with. I feel bad because I'm not sure how to put him at ease. So, I decided to write an article on ways to help our loved ones who watch us suffer from the side lines. They shouldn't feel guilty or helpless because they actually help us more than they realize, mainly by just being there to listen to us vent, or to hold us when we cry. My husband also takes me to doctor's visits, which really helps me because it's hard to drive while vomiting. Family and friends can play a huge role in helping patients deal with a chronic illness, and in this case, Gastroparesis suffers.

There is a video that one of my friends with Gastroparesis made of her husband discussing his experience in dealing with my friend's illness. It's a touching video and probably will help others understand what it is like to be the loved one of a person suffering from Gastroparesis. The video can be found here:

There is a group that I created that will help answer questions and give advice. However, always check with your doctor and pharmacist. I am a licensed pharmacy tech, so I do have a medical background of sorts and I've been published in geological journals for research. Additionally, United Healthcare uses my blog as an electronic resource for new Gastroparesis patients. One of my friends forwarded an email to me that surprised me that she got from United Healthcare listing my blog. So, that's my background. Here is the link to my group, Stronger Than GP (Gastroparesis Warriors):

How To Help A Friend/Loved One With Gastroparesis:

Be honest - say, "I wish I knew what to say, but I care and I'm here for you."

Be there for them in any way they need you.

Do go to support group meetings with your friend, we do have a sister group for family and friends who have loved ones with Gastroparesis. Family and friends are always welcome, and that's the best place for you to ask questions and learn about Gastroparesis. Loved Ones with a Gastroparesis Warrior:

We also have another group, GP Warrior Parents & Parents of GP Warriors: This group is for parents who have Gastroparesis and also for parents who have Gastroparesis Warriors.

I also have a page that I update with motivational pictures, educational articles, make jokes, and post to help those with Gastroparesis. My page is: Emily's Stomach:

Keeping it light and making jokes is okay. We're not as fragile as we sometimes seem. It's all about the timing and the presentation. If you know the person well, do what you know they will find funny. Laughter is healthy. You can also join the group, Laughing Through Gastroparesis: for comedy and stress relief.

Let them know that they can always talk to you - even if it's just a vent session.

Always listen when your friend is frustrated - Gastroparesis is very frustrating.

Be there if your friend needs help, but encourage them when they want to do it themselves.

Remind your friend that he or she is in a very hard position - but that he or she is coping well.

Treat your friend as though they are a whole person - despite any limitations. Your friend wants to feel in control and capable, not as if they are wearing a big old banner for sickness. Even with Gastroparesis, we want to feel as normal as possible.

Learn about his/her Gastroparesis. Ask your friend for more information about how GP affects them. Just because you read about Gastroparesis online doesn't mean you know how it affects your friend. We all cope differently.

Let your friend know you are thinking of him/her. Send a card, an email, a text, a phone call.

Offer specific forms of help - "I'm going to the grocery store, do you need anything?" or "Can I do some laundry for you?" Any number of household things, your friend might need help with. Offer to take care of it. On a bad tummy day, we barely have the energy to get out of bed, so this is SO helpful.

Offer to cook within your friend's GP dietary limitations: Or we also have another group, Friendly Recipes for GP Warriors:

Offer to help research the Gastroparesis, if your friend wants help.

Volunteer to watch their children. Take the kids out for ice cream or to a movie to give your friend some peace.

Offer to watch his/her kids during doctor appointments. It's often hard to find so many babysitters, and taking kids to an important appointment isn't always an option. Especially with all of the procedures and testing we endure at doctor's visits.

Chauffeur your friend around to places they may need help getting to like the doctor's office, the grocery store, and other errands.

Ask the person's partner how to best help the family. If there are a number of things to be done, organize a number of friends to help complete these chores.

Offer to take your friend to the doctor and take notes for them.

Do be an advocate for your friend.

Do encourage your friend to continue trying new things. When treatments don't work, those with Gastroparesis get discouraged. When doctors give up on them, they get frustrated. When they get tossed around from one specialist to another, they get anxious. But stay by their side and tell them you'll be there when they are ready to try something new. That tells your friend that they have a reason to keep trying. That means more to them than you realize.

How NOT To Help A Friend/Loved One With Gastroparesis:

Don't tell your friend how they "should" feel. Unless you have their illness, you don't know.

Don't presume you know what's wrong with your friend or what they're going through.

Don't compare your (xyz) to their (abc). That's like comparing apples to elephants.

Don't discuss worst-case-scenarios unless your friend brings it up first. And if they do, listen supportively - this is the hardest conversation imaginable for your friend.

Don't suggest drugs or treatments someone you know takes. Your friend is going through a treatment plan with his or her doctor - let the doctor take care of the medical advice for GP.

Don't criticize them for whining on a rough day. Gastroparesis is rough and good days are few and far between.

Don't offer the latest medical advice you heard about on Dr. Oz. In fact, don't give them medical advice at ALL, unless your friend has asked for you to help research the illness.

Don't downplay or belittle their illness in anyway. Your friend is fighting a battle - don't lose sight of that.

Don't assume your friend copes the same ways that you do. Let him/her cope in his own way. Don't tell your friend that they are coping the wrong way.

Don't bring up each "treatment" you've heard about Gastroparesis. He or she is constantly being bombarded with "treatments" and needs a break.

Gastroparesis isn't just a matter of attitude. Don't say things like, "when are you going to get out of bed?" or "I heard stress causes this illness." It's unfair and not true.

Be sensitive to limitations. Don't say things like, "Let's get some fresh air and take a walk." Your friend knows their limitations, which may change from day to day. Things they could do yesterday may not be the same as what they can do today. Don't question that. Gastroparesis can cripple your friend to the point that they can't leave the restroom.

Never insinuate that your friend is "faking it." People with chronic illness generally downplay the severity themselves, but to hear someone imply that the illness is "made-up" is a special breed of hurt.

Don't ever ask "How are you?" or "How are you feeling?" because the answer never changes and your friend doesn't want to talk about it. Instead ask, "How is your day going?" or "Is there anything you need help with today?"

Finally, if someone you love is suffering from a chronic illness, learn about the disease, help out with daily errands and chores, and give emotional support. Sometimes we all need a shoulder to cry on.


Toni Bernhard writes this in her article,

"Here are four tips to help you communicate more skillfully with loved ones when chronic illness becomes an inescapable part of your life.

Get help from a neutral third party. Often the best way to educate family and close friends about your diagnosis is to use a third party source because it takes the emotional component out of the equation. There are online organizations and associations devoted to every chronic illness or condition. Once you find them, you can forward links or print out pages for loved ones to read. If you have a book about your illness, photocopy the chapters that cover what you’d like your loved ones to know about your new life. (I did this for my close friends, attaching a short explanatory note to two chapters that I copied.)

Write a letter. If loved ones are not being supportive even after you’ve tried to educate them about your illness, write a letter to them. Describe what your day is like now, and express how you feel about this unexpected change in your life. A friend of mine wrote a letter like this to her mother when, despite their many conversations about her illness, her mother persisted in saying things like, “If you’d just get up off the couch and go out and exercise, you’ll be fine.” The letter transformed their relationship. Now her mother is one of her main sources of support.

Find non-illness related subjects to talk about. I had to learn how talk to others as a person with a chronic illness. At first, I assumed my family and close friends would want to know everything about my illness. After each doctor’s visit, I’d send them a long email describing the appointment in detail, medical jargon included. I’d get back a supportive sentence or two. It took several years for me to realize that my relationship with them would be more enjoyable and richer if I didn’t always talk about my illness. Now I ask about their lives and talk about new interests that I’ve developed. It provides all of us with a much needed respite from thinking about my illness all the time.

In the end, accept their limitations. Some family and close friends may never accept this change in your life. Try to recognize that this inability to accept you as you are now is about them, not you. Your medical condition may trigger their own fears about illness and mortality. You can’t always fix how others think of you or treat you, but you can protect yourself from allowing their lack of understanding to exacerbate your symptoms. The best way to protect yourself is to cultivate compassion for them. If you can learn to wish them well despite their inability to support you, you can free yourself from the mental suffering that arises from your desire for them to be different than they are. The physical suffering that accompanies chronic illness is difficult enough without adding mental suffering to it.

Everyone (including yourself as a caregiver) needs time to let Gastroparesis, which is a life-changing circumstance sink in. Hopefully, these tips will make the road to acceptance less stressful."


10 comments: said...

Em this is WONDERFUL!!! Another way you can encourage your GP'er is (if the situation is appropriate) that you (as caregiver) still find them sexy!!! I know what that does for Jonny. Can only imagine what it would be like to be this ill. Also this article was perfectly timed, as I've been flat on my back for the past almost week, and he's had to take care of me, so I've been feeling like a total failure when I'm supposed to be taking care of him!!! Thanks again!!!!

Anonymous said...

Thank you for writing this. :)

emilysstomach said...

LaShelle just addressed this in her new article. The link is:

emilysstomach said...

Thank you for reading! <3

LaShelle Shuman said...

LOVE this Emily! <3 you

Unknown said...

I'm so glad I came across your website, my wife has GP and I think from all the info and groups for FB I'll know a lot more TY

Michael said...

Great,Thanks for sharing
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Kathy said...

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Alan Smith said...

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Unknown said...

Thanks Emily x
I have lived with gastroparesis for the past 16 years caused by type 1 diabetes I have tried absolutely everything even to the point I refused to eat for days I lost alot of weight 44kgs at the age of 31 nothing helps it's the most awful feeling like a lump in the stomach taste of metallic acid I know this is going to sound gross but the only way I can manage is by forcing myself to burp with a toothbrush..... grose but helps as when you burp it moves the food either up or down (you do what you need to when in agony) but it's a big relief when theres nothing else that works my partner finds it hard to deal with so reading this has been extremely helpful for him
So thanks for this article x