The Dos and Don’ts of Gastroparesis, but for Friends & Family
That’s right. This isn’t for those of us that suffer from Gastroparesis, this is for those of you that are family and friends and are *trying* to help or understand what we are going through.
If you don’t quite understand what it’s like to have Gastroparesis, you can read a little about it here.
A lot of friends and family mean well, but there isn’t enough education on Gastroparesis for them to understand what it’s truly like and how to approach their loved one. Unfortunately, a couple of things end up happening:
- you end up saying or doing the wrong thing and it upsets us
- you get frustrated with our health state and stop listening to us
- you get frustrated with our lack of knowledge on what to do and stop wanting to know anything about our illness
So, I have compiled a list over a period of time of things that family and friends have said, done or suggested to those of us with Gastroparesis, and I am basically giving you a cheat sheet on how to communicate with us. (these aren’t all my personal experiences)
Don’t Say, Do or Act:
- DO NOT say “wow, I want to be on your diet, since you are losing so much weight”. This is not helpful or funny. Most would give ANYTHING to eat normally and gain weight, so please keep those thoughts to yourself.
- DO NOT say “you really need to eat better, and you won’t gain so much weight”. So, yes, there is a flip side to the first one. Some are gainers and it is mind blowing, because we barely eat, so we don’t know how it is happening
- DO NOT suggest some random 1-off tip like, “if you would just take shots of apple cider vinegar every day, you would be fine”. That’s literally not how it works, but okay.
- DO NOT say or suggest that this is “all in our head” or “it’s just a stomachache”. These are incredibly rude, for one, and two the pain is incredibly real. Yes, it does take a mental toll, which can worsen things, but we didn’t wake up one day and decide to will ourselves sick, I can promise that. Also, it is WAY more than just a stomachache, we just don’t know how to describe the pain any other way. It is NOTHING like the stomachache you might get.
- DO NOT try to one up our illness with yours. We don’t want to be in any competition like this, and if you do actually have a chronic illness, we should make time and space for both of our illnesses and can discuss them at appropriate times, so we both feel heard and loved on.
- DO NOT stop inviting us to places, because we say no too many times. I know it gets annoying, but we say no a lot because we truly are so sick and/or don’t want to be a downer
- DO NOT try to sell us your MLM products. I know you are just trying to make some money, but I can PROMISE you that your company has never personally dealt with someone with Gastroparesis and they were not developed for that. They will not work.
- DO NOT tell us “you need to just suck it up and EAT”. Gee, never thought of that one, maybe it’s time to try it out. (insert eye roll)
- DO NOT give up on us. SO MANY of my clients have had their friends or family tell them that they just can’t handle hearing about their sickness anymore, because it’s exhausting. We get it. We live with it every day. You telling us that you can’t handle it anymore, literally only hurts more, as that means our support system is getting smaller and smaller.
I could go on, but I think that is a good overall gist of things not to do or say. Yes, it sounds and feels very negative, but don’t worry, I am about to give you a list of all the positive things you SHOULD do or say!
Let’s change this attitude and move forward!
Things you SHOULD do, say or suggest:
- When we say we are in pain or aren’t feeling good, it helps to either just say “I’m sorry you are feeling this way” or ask if there is anything you can do to help. Sometimes, just the offer is nice to have, even if we know you can’t do anything.
- It’s totally okay to send articles or give information you found on the internet that you think could be helpful, but leave it there. Don’t force it on us, but we do appreciate you thinking of us and trying to be helpful.
- Do continue to invite us places. We will say no more often than not, but it feels nice that you want us there. Also, a little extra tip is to ask what activities we would feel comfortable doing in the future.
- Learn, listen and be there for us. That is all we need. A good support system is just as valuable as anything.
If you are someone that is suffering from Gastroparesis and your family or friends aren’t understanding what to do or say, send this to them. It’s not going to fix it 100%, but a guide from someone who actually suffered through this is helpful.
If you are a family member or friend, I commend you for taking the initiative for your loved one, keep up this energy. Remember, be open-minded, be kind and be there for them.
In the next blog, I will “interview” a few of my loved ones to hear from them how it felt for me to be so sick, and their thoughts and fears around it all. Should be interesting.
Until next time,
Keep it Fresh. Keep it Simple. Keep it Real.