How to Support A Loved One’s Chronic Illness Diagnosis

Do you know someone who recently got a chronic illness diagnosis? Here are a few things you can do to support a loved one’s diagnosis. I know family and friends mean well, but certain things don’t come off as helpful as you want them to. I could honestly go on and on about personal experiences that have been invalidating when it comes to my Fibromyalgia. But since I know you want to know what actually is helpful, I’ll leave that out. So I’ve provided some tips for you to support them in a way that they will appreciate.

If you are looking for a diagnosis yourself, I have a few tips to help you advocate for a faster diagnosis.

Research your loved one’s diagnosis yourself.

Google is free. I know when you have never heard of something or you don’t understand, our human nature makes us inquisitive. It’s amazing that you want to know more! Please take it to Google. Your loved one is probably overwhelmed. Right now they’re probably trying to learn themselves. There’s an emotional component to chronic illness that they’re dealing with. It’s hard to understand you’re going to live sick the rest of your life. They’re most likely exhausted from processing this themselves, and they don’t want to explain it to every single person who asks.

Find groups with the diagnosis to get more insight.

The internet is a fantastic source with a wealth of information. You can find groups specific to the diagnosis. This is great because you can read personal experiences from others who have been living with the illness themselves. Read and listen. Humans want to be understood. By reading through others’ experiences you can start to understand some of what your loved one is going through, not only physically relating to their illness, but mentally and emotionally as well.

Ask what helps support a loved one’s diagnosis as they understand it.

On days where they aren’t feeling bad, ask them things that help when they’re having a hard day. That way you know in advance any way you can help them to feel better or be more comfortable on those high symptom days. Then you can give them gentle reminders like resting when they need.

Ask if they need you to talk about something to distract them from pain. Ask if they need a quiet, dark room. Ask if heat or ice helps. You can tell them ideas you saw on the internet groups that helped others, but just ask if they would like ideas before offering. Please remember to ask on a day where their symptoms are not overwhelming. I know personally that my brain can’t process much when I am in pain.

Be a listening ear. Not everything needs a solution.

Sometimes when you’re having a rough time with a chronic illness, you just need a safe place to vent. Be careful to check with your loved one before trying to offer a solution to fix a situation. Ask them if they are just needing a listening ear, or if they want solutions offered. I know the thought behind offering solutions is well meaning, but sometimes the best way to support a loved one’s diagnosis is to just listen and agree that it sucks to be sick.

Offer to go to appointments or advocate for them when they need.

Appointments are pretty hard when you’re battling a chronic illness. Many suffer from memory and focus issues. This makes sense when you understand that their brains are constantly processing pain and other symptoms. If you can imagine a time where you were in a great amount of pain, try to think about how hard it would be to remember details or focus on a conversation. It’s pretty difficult.

Offer to go to doctor appointments with your loved one. They might appreciate having someone who can advocate for them. Sometimes when a doctor dismisses your pain, it’s hard to fight back because you can’t focus. This is extremely frustrating because you don’t get anything helpful out of the appointment and it feels like a waste.

Ask beforehand what the objective of the appointment is. Do they need meds to change? Do they need a referral to a specialist? Did they find their own medical research papers and want to advocate to their doctor for a new treatment? This will really help to keep the appointment on track because you can make sure it gets done, even if your loved one is having trouble processing things because of a high symptom day.

Try to manage your sadness and frustration of their rough days away from them.

Having a chronic illness sucks. It also sucks for anyone it affects around you. Trust me. We know. We are hyper aware of the burden on other people it can be sometimes when we are sick. The problem is, it’s out of our control. I can’t just make my symptoms go away. I need help. Bottom line.

I know many people feel the same about their own illness. The thing is, we are all humans and we all have feelings. I know plenty of people around me have felt frustrated as a direct result of my illness and its affect on them.

The thing is, the guilt is already awful. I know you can’t always control it, but please remember that it isn’t our fault. Showing how angry an frustrated you are about the situation – EVEN IF it’s not at them still hurts. Your emotions aren’t their responsibility, but if you can at all manage them when they aren’t around so they feel less targeted by them it helps.

Remember that they have their own medical team.

When you have a chronic illness, people tend to try to offer advice to “cure” you. Not only is this annoying, it diminishes their illness because they now know there’s a level of belief you have that they can overcome an illness with no cure. I’m not saying miracles can’t happen, but the likelihood is slim. So be very careful when you offer advice, and ask if it is wanted first.

Not to mention, I guarantee they’ve heard about yoga and essential oils.

Do not point out differences in appearance, behavior, habits etc. They know.

I know that I used to be able to run 7 miles with no problem. I understand I was competitive swimmer. I see my body changes. I paid for the new clothes. I am painfully aware of how loading a dishwasher makes me sick in bed for days recovering. It’s drastic. It’s different. I know.

They will also know their changes. They will see the housework pile up around them. Feel free to offer help with these things. It’s definitely a good move. However be really careful about any comments you make. There’s plenty of comments that are just not helpful. Even ones you think might be helpful like “wow, you’ve lost weight and you look great!” They might not have intentionally tried to lose weight. It could be because they’re sick. Same goes for weight gain. Their mobility probably changed, but they also could be on medications that result in weight gain as a side effect.

Bottom line is just think through any comments you have. If it’s anything comparing them from before their sickness to after, it’s probably not helpful. Even if you think it is.

Hopefully you have some new ideas on how to support a loved one’s diagnosis.

I hope you were able to get some practical advice from this post. I know that the start of a chronic illness diagnosis is really scary. Both for the individual and everyone around them. I am grateful you’re reading this, because it shows that you want to do everything you can to support them. That deserves a participation trophy. Leave a comment or reach out on my socials if you have any questions.