Thursday, February 20, 2014

How to Love Those with Chronic Illnesses: Do You Give Advice?

This post has been a long time in the making, but some recent events in my life have caused me to actually write everything down.

I have noticed a pattern in my life that once I tell people I have a chronic illness, suddenly I'm bombarded with unsolicited statistics and "facts" about certain diets, activities, pills, etc. that are supposed to change my life drastically and even cause my disease to disappear.

I'm not saying these people are terrible or wrong, and I'm certain they have good intentions. However, I would say they're a little... misguided.

Here's a few reasons why:

1. It Comes Across as Arrogance.

You may have the best intentions in the world - you just want to see us healthy and doing well. Those sentiments are definitely appreciated, but often times when someone talks to me about what I should be doing and eating in order to be healthy, it makes me feel as though: a. They believe I'm not doing those things right now, b. They know what's good for me better than I do.

Please don't misunderstand me - I'm certain there are a number of people out there who are experts on nutrition and health. However, if I haven't asked for advice, it's likely that I either have a plan, or I'm not at a place where I want a plan of action at the moment.

2. It Makes Us Feel as Though You're not Listening.

This is a really big one for me. When someone tries to tell me about a diet or pill that would help me, sometimes I just need to politely decline and say, "You know, I'm really glad that works for you, but I don't think it's something that will help me."

...And then they don't stop.

Unsolicited advice is frustrating, I'm not gonna lie. But when I decline and the person continues to tell me how great it would be, it makes me feel as though they care more about doing what they think I should do than what I know for a fact is good for me. Again, I'm not saying this is their conscious intention, but that's how it makes me feel as well as many others with chronic illnesses.

3. What Works For You May not Work for Me.

Going along with the last point - if there's anything I've learned in the 18 years I've struggled with illness, it's that no two people are exactly alike. There is no specific formula for health. Each person responds differently to certain foods, medicines, etc. I am so happy for the people who have found what works for them, and I know there are general rules of health that are good to follow (eating fruits and vegetables, keeping sugar intake to a minimum, etc.).

However, the fact still remains that certain diets that work for others absolutely will not work for me. For example, my sister needs to be gluten-free because of her illnesses. However, it would be a bad decision for me to be gluten-free, because I digest things differently and I need that substance. I was also recently offered an (all-natural) pill that was supposed to cut the pain from my liver disease in half, and double my energy. The problem with that, though, is if I'm feeling pain from my PSC, then I need to be seen by my doctor. So if I'm taking something that causes me not to feel that pain (which I'm not certain if that would work anyway), then I could be in trouble.

4. Chronic Illnesses are Complicated.

That's the bottom line. Chronic illnesses are very complicated, and cannot always (or often) be solved with dieting, exercise, or different pills/vitamins. I fully agree that eating healthy and staying active are good for anyone and those things should be done, but again - it looks different for everyone. Just because I may not be doing the same thing as you doesn't mean that I'm not healthy.

My doctors keep telling me that aside from my two diseases, I'm extremely healthy. I'm at a healthy weight, I have very low blood pressure, low cholesterol, and all my counts on blood tests (besides my liver enzymes) are really good. This shows me that I'm doing something right, and I will continue to do what I know to be good for me.

5. If We Want Advice, We Will Ask.

Please be conscious of this, and please follow it - those of us with chronic illnesses are constantly inundated with what we should or shouldn't eat (especially those of us with digestive diseases), and it can easily overwhelm us. If we're close to you, we either trust you enough to hear unsolicited advice, or we will ask for advice when we want/need it. If you're questioning whether we want to hear advice or not, it's probably a safe bet that we don't.

I have no problem with people asking me if they can give me advice, as long as they're okay with a "no" answer. If you're not okay with me saying no, then please consider not asking in the first place, and not giving the unsolicited advice.


Those of us with chronic illnesses really do care about the people in our lives, and we know you care about us. However, we often times feel alone and misunderstood, and that feeling gets exponentially worse when we're not listened to or it's assumed that we're not taking care of ourselves.

How do you care for the people in your life who suffer from chronic illnesses?

Love them. 
Be there for them. 
Listen to them. 
Comfort them.
Be willing to admit you don't have all the answers, just like we don't.

If people are able to do those things, sufferers of chronic illnesses will feel much more loved and understood - and chances are, we'll begin to trust you enough to ask for your advice.

1 comment:

  1. Hi Bethany! I think that's the best advice to give when someone is sick. Just to listen and to be there when they need you. I was wondering if you could answer a quick question I have for you! I hope to hear from you soon! :-) My email is hvsj12 AT gmail DOT com


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