When friends don’t understand chronic illness

As someone battling a chronic illness for over a decade, I’ve seen friends come and go. I also get asked the same questions every day about my illness. People want to know how they can help. The fact of the matter is you really can’t, and many people don’t understand why. So for those friends of chronically ill people who don’t understand chronic illness, this is a brief road map on how to be a better friend.

People living with a chronic illness are some of the strongest people you’ll ever meet. Who wouldn’t want to be friends with a Warrior?! Unfortunately, many don’t, and honestly, it’s their loss.

I’ve been battling chronic Lyme disease for the past 12 years, and I’ve seen many people come and go. I know how kind, intelligent, and funny I am, so if you don’t want to be friends with this cool chick, you best be on your way. But if you are lucky enough to be my friend, here are a few things that I’d love for you to know.

People with a chronic illness are not looking for a pity party. For many of us, we’ve been dealing with chronic symptoms for years, maybe even decades, and the last thing we want is your pity. Then it comes down to the question of, “how can you help us”? Which is probably a different answer for everyone.

But I’ve thought about this a lot, and spoken with many chronically ill friends, and it really comes down to this: listen, acknowledge, and sit with us in the pain without trying to make it better. Affirm with us that it sucks, encourage us to keep going, and let us know you’ll be there for us through thick or thin. We all want that magical pill that will cure us. I want it, and you want it for me. But unfortunately, that pill does not always exist, and we need to make the most out of our situation while we’re going through it.   I would like to get better. But the problem is, it's unlikely to happen.

Checking in on us is great. Knowing we are thought about goes a long way, but please be okay if our answer is “I can’t talk right now.” I think many friends of chronically ill people get discouraged that the friendship becomes a one-way street for a while. And, honestly, it’s fair and valid to feel that way. Not everyone is cut out to be friends with someone who is ill. This is one of the unspoken side effects of chronic illness no one understands.

Read more: Friends who disappear when you are ill

We don’t blame you for it, but we will feel disappointed if you don’t decide to stick it out. It takes a strong person to be there for someone else without anything in return. There are going to be days when plans get canceled last minute, and things change at the drop of a dime. Trust me, it’s as frustrating for us as it is for you. But putting our health first needs to be our priority, as we’d want you to do the same. When we have to change plans, please know it’s not a “no”; it’s a “not right now.”

Now, I’d like to answer that question of “why we can’t always talk about it” because it’s important, and it honestly has nothing to do with you. There are many reasons why we can’t always talk about what is going on. I can’t speak for every chronically ill person, but I’ll share my experiences with this. I’m an extrovert, and honestly, I love talking! I love communicating with others, but sometimes I feel like a broken record.

Whether I’m explaining my symptoms for the umpteenth time to the same person or to a stranger, that person will never truly understand what I am going through. I verbally can’t always express the pain, frustration, and fear I have surrounding Lyme disease. Sometimes talking about the truth makes this illness too real, because sometimes I just want to live in an alternate universe where I’m not sick. At the end of the day, most chronically ill people want to be “normal” and to “fit in.” We don’t always realize how beautiful it is to be unique and to not fit in. It takes a long time for us to view our illness as a gift and not a curse. Please don’t force it. I promise you we’ll get there on our own.

Read more: When friends abandon you during illness

Next, have you ever offered unsolicited advice? You’re probably nodding your head right now and making a “whoops” face. We’ve all fallen into this trap, even from one chronically ill person to another; I’ve accidentally done this too. Giving advice comes from a place of love and desire to help. The keyword here is “unsolicited.” If we don’t ask, we don’t want your advice. If you simply cannot contain yourself from how amazing your advice is, then please be okay with us saying, “We’ll look into it,” and moving on from that conversation.

We love you, and we love how excited you get about our healing, but we’ve most likely heard it all already. I can’t tell you how many times I’ve heard, “Have you tried yoga, essential oils, meditation, or such and such new diet?” Like, “Girl, I’ve been battling this invisible illness for over a decade… you really think I haven’t tried all of those things already”? Also, every person is different, and one person’s healing journey is not the same as someone else’s. So, I, too, am thrilled “X, Y, and Z” treatment worked for so and so, haha, but my personal battle with chronic Lyme disease is just that… it’s personal. I’m not a statistic, and I’m not like anyone else.

Finally, if you still want to be friends with someone as awesome as me, I hope you’ll realize that I am more than my illness. I don’t want to be your “token sick friend” because, at the end of the day, I am not my diagnosis. I am going to heal from Lyme disease, I know I will, and once I do, you better like me for me and not for this disease. Will I change? Maybe. But if I do change, it’s going to be for the better, and I hope you’ll stick around for the ride. I’ll always be me, but I hope after years and years of being sick that I have become a more compassionate person than I was 12 years ago.

I certainly know that I am a more grateful person because I never take a healthy day for granted. We all have “baggage,” even you. But I would never say that baggage defines you, so please don’t say my illness defines me. Let’s be friends because we like each other. I promise you, I have a lot of love to give, and if you stick with me during my dark days, the brighter ones are going to be that much brighter for us both.