The do’s and don’ts of friendship with someone who is chronically ill
Learning as much as possible about the disease is a good start
As a Cushing’s disease survivor, I rely on my friends and family more than I would like to. There are days when I need help cooking, showering, or getting other simple tasks done. It can be frustrating and a little humiliating to rely on others for things that healthy people are fully capable of doing.
Chronic illness affects my social life as well. I’ve had to cancel plans many times because my head hurt, my legs were in pain, or I was simply too tired. After five years of dealing with Cushing’s disease, I now know that some days I must prioritize my health over relationships. I used to worry about that a lot, but those in my current social circle are incredibly understanding.
It took me a while to accept that I needed other people. I struggled to ask for help, and learning how to communicate my needs has been difficult for me.
If you’re looking to help a friend or family member with Cushing’s disease, following are some things I’ve found helpful (along with other things that aren’t so helpful).
The do’s
The people in my life have done a lot for me, but there are a few things they continuously do that I find particularly supportive.
1. Cleaning: During bad weeks, my apartment becomes a mess. My husband works full time, and I work multiple jobs at home. When I’m feeling fatigued, a friend will come over to help me clean. It’s a tremendous help, because sitting in a dirty home makes me even more miserable than I already am.
2. Cooking: One thing I’m dealing with as a side effect of my medication is a lack of appetite. I find myself forgetting to eat, no matter how hard I try. Several friends frequently come over specifically for meals. Scheduling meals with someone else forces me to remember to get the nutrients I need.
3. Education: Having to constantly educate people about my disease is exhausting. Many of my friends go out of their way to understand my illness as well as emergency treatments. One of the big risks of Cushing’s disease is going into an adrenal crisis. If that happens, whoever I’m with would have to force hydrocortisone down my throat.
When I discuss my illness with friends, they truly understand, and I don’t have to start from scratch.
4. Being understanding: Occasionally, I have to change plans due to my illness. Sometimes I can’t attend an event because it’s not mobility-aid friendly. Having friends who check in with the places we plan to visit to see if they’re wheelchair accessible takes the pressure off me. Furthermore, showing an interest in what I’m going through and recognizing that it’s an ongoing struggle is a great way to show support.
The don’ts
Of course, there are a lot of things that people in my life have done that have left me feeling upset.
1. Invalidating statements: I have a chronic illness, which means I’m never going to get better. Telling me to “get well” or “focus on getting better” can be infuriating. Sometimes this happens in a manner that is known as “toxic positivity.” Phrases such as “everything works out in the end,” “it could be worse,” and “it’s not as bad as it seems,” are more invalidating than helpful.
2. Judging: A comment I hear a lot is that my husband does “too much” for me. It’s true that my husband does a lot of little things throughout the day, such as getting my migraine caps, refilling my water, or helping me shower or change. But we are very happy with our relationship, and those things require little effort. He doesn’t need saving!
3. Infantilizing: I’m sick, but I’m not a child. When people act like I can’t function or do simple things, it undermines everything I’m capable of. If you’re unsure about what I can and can’t handle, just ask.
I am so grateful for my friends and the fact that they are constantly trying to learn more about Cushing’s disease.
What makes you feel supported? Please share in the comments below. You can also follow my journey on TikTok and YouTube.
Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.
About the Author
Debra Trump
Noura,
This is all so horribly familiar. As terrible as that sounds, it is so nice to know that are others out there suffering with the same issues as I am. It all seems so completely simple to figure out. I often wonder if things were reversed, would I be the friend that I want mine to be. I keep telling myself yes but think of how difficult it must be for them as well. That thought does not last long and I think nah, my friend should be researching and asking all the questions she needs to. I hired a friend's 13-year-old daughter to walk my dog. I knew she wanted to know more, was she wondering why I was so lazy, and I should get up and walk the dog myself. One day I just told her to sit down, and I opened it up with something I thought might pull out more questions. I told her that I had a brain tumor and the doctor pulled it out from my left nostril. First a look of shock and total disbelief, but then so many questions. I think she may know more about it than my family. The following day after she walked my dog, she asked if she could do anything else for me. And told me I didn't have to pay her for it. I found out she loves to vacuum, she vacuums just like a 13 year old, but it so wonderful.
I wish you a pain-free day of incredible comfort and the capability to do whatever it is that you may really want to do. Not anything that you need to do! I know they exist, but are few and far between and must be used appropriately. Blessing to you and your family.
Chronically your fellow Cushie,
Deb T