How to best support a friend with chronic illness
The gestures I've found helpful — and not so helpful — while living with PNH
Comforting people when they’re going through difficult times or looking for support is hard to navigate. I’ve been on both sides of this situation, especially since I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH). It’s tricky to know the right thing to say or do.
I recently connected with a friend who is dealing with medical struggles, and our conversation got me thinking about how I’d want to be supported if I were her.
Check in every so often
Reaching out to check on a loved one going through medical issues is a great way to show that you care. But it’s important to strike a happy medium of checking in without being overbearing. A simple text with few questions that emphasizes that you don’t need a response won’t pressure them to use energy they might not have.
When I’m facing tough times, I’ve found that remembering to respond to everyone’s well wishes is a heavy mental load — but that doesn’t mean I don’t appreciate them. If you’re checking in on someone and they either don’t respond or take a few days to get back to you, don’t be offended. Sometimes patients may not have enough energy to check their phone at all.
During difficult health periods, many people message me to say that they admire my strength. Although it’s a wonderful compliment, sometimes I don’t want to be reminded of why I’m strong, which is because I’ve faced medical trauma. As an alternative, I love getting messages that make me laugh. A funny video, message, picture of someone’s pet, or anything that will make me smile helps tremendously!
A small gift has the potential to brighten someone’s day. For the friend I mentioned earlier, I wanted to send a little something to show how much I cared and sympathized with her situation. At first, I struggled with what to get her. When I searched “gifts for patients” there were some good ideas, but I was certain those things wouldn’t have a real purpose and would just collect dust.
I ended up sending her a few items that focused on her comfort. One was a nice pajama set. Nothing feels better than cozy clothes when you’re in the hospital or at home not feeling well and experiencing symptoms. Big and loose-fitting clothes are perfect to snuggle in.
The second and third items are part of my “hospital essentials” list: a stroller fan and grip socks. When I was pregnant with my daughter, I was gifted a stroller fan that I was advised to bring to the hospital when I gave birth, which was the best advice I’ve ever received. Not only did I bring the fan for labor, but I’ve also brought it for all of my PNH-related hospitalizations.
The stroller fan has flexible arms that you can wrap around the rails of a hospital bed. I like to move around in bed, so having two — one for each side — is perfect. The movement of air on my face in a room filled with stale air is very helpful. I really hope my friend finds it to be just as useful.
Grip socks are also on my hospital essentials list because they’re a great alternative to wearing shoes in your room. The ones I got were fuzzy on the inside to make them even cozier, and the colors match the pajama set.
When my friend received the gifts, she sent me the sweetest message saying she appreciated the meaning behind each item.
Showing love and care is a beautiful thing, whether you’re giving or receiving. My best overall advice for supporting a friend with a chronic illness like PNH is to adopt a patient’s perspective and consider whether a gift would be helpful or energy-consuming. But it’s also important to prioritize your own mental health, too. It’s OK to give support by saying, “I’m sorry I can’t be there for you right now, but I’m thinking of you and wishing you well.”
For other patients reading this, I encourage you to stay positive and take your struggles one day at a time. I’m here for all of you.
How do you support loved ones with health struggles? Please share in the comments below.
Note: PNH 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 PNH News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.