Let me start out by saying that making friends isn’t the easiest thing in the world. Now, throw in a chronic illness and you’ve got yourself a situation. But I’m not just talking about making friends in this post, I’m also talking about friendships in general.
Now, something that’s pretty typical to ask when getting to know someone is “Well, what do you do? Do you go to school? Do you work?”, and for me, that’s the most dreadful question to have to answer. And it’s always the first one asked, too. Not everyone understands you when you say “Oh, I actually don’t do either, I can’t work right now due to health issues”, surprisingly. And then, for what feels like the millionth time, you explain that you have AS, and your body is in constant pain, and right now you’re just trying to learn how to deal with everyday life while balancing having an autoimmune disease. After saying all of this, you either get someone who understands and asks no more questions or someone who’s wondering “what’s so hard about having a chronic illness?”. And this is where meeting new friends, and trying to tell your pre-existing friends, all come together.
When I first got sick, I kind of cut myself off from all of my friends. I was in a constant state of excruciating pain, and that alone made me not what to explain myself to anyone. I had no idea of what was going on with my body. All of my time was spent either sleeping, at doctor’s appointments, or watching YouTube. I spent my time like this for months, until my physiotherapy started helping me feel better. When the weather got warmer, I started reaching out to my friends again. At this point, I knew I had chronic pain, but for unknown reasons. This made it harder to explain myself than it is to do so now. I would just tell my friends that it hurts to walk and that doctors can’t figure out why, and most of them were empathetic and understanding.
Let me tell you, having a chronic illness is a GIANT part of my life. So I talk about it quite often. I like to talk about it. Some people don’t like that, so I lost a few friends right off the bat just from explaining myself when asked: “what’s up?”. After a few explanations of what was going on, they no longer asked what was up, and slowly faded out of my life. Or, if I was upset that no one could figure out was going on inside of my body, I would be told “Don’t overreact so much. They’re doctors, they know what they’re doing”, and would try to dismiss everything I said as me just being dramatic. A big part of having a chronic illness is the support system you have around yourself. Your friends, your family, your doctors, therapists, etc, and I learned pretty early on that if someone doesn’t show you support, you don’t need them. Having AS is stressful enough on its own, I don’t need people around me that think I’m either faking or overreacting to something that’s a serious issue, and neither does anyone else.
Now, don’t even get me started on the fatigue. This is probably one of the biggest issues I have with being sick. I’ll get exhausted from doing something like going to the mall for an hour, or even going to visit family for half a day. I’ll spend the next day in bed sleeping all day, with no energy when I finally do wake up. Fatigue is the most frustrating symptom to deal with, because it’s seen as lazy, and no one really understands it. It just happens. This is also a common issue when planning events with friends. Sometimes I cancel things last minute because I just can’t bring my body to get out of bed, or if I do, I just don’t have the energy to travel to see friends for a few hours. I feel extremely guilty about my fatigue, but it’s something that I can’t help, and it’s gonna be an issue for the rest of my life, but my health and well-being will always come first. We should never forget that. True friends will understand. They might be mad, as they should be, but they can see from your point of view, and realize that there’s always next time. I’m thankful that the friends that I have care about my health first, no matter how long it took to get to this point. They stuck around for the long haul.
Saying all of that though, it’s extremely important to let your friends (and family) know your limits. If you’re going through a flare, tell them. If you need help walking up the stairs, or getting up out of bed, let them know. They’ll be there to help you. If you are too tired to go see them, be straightforward about it, the more honest you are about your illness, the easier things go, I’ve found. There’s no use in hiding what is now you.
As I said earlier, having a strong support system is the most important thing for your physical and mental well-being. I’m so thankful for things like Instagram and Facebook because I can join groups and connect with people who have my illness or similar illnesses all around the world. There’s nothing that feels better than having someone to talk to who understands what you’re going through and goes through similar things that you do. It’s incredibly freeing and so helpful. I’ve found so many new friends through Instagram over the past year and I’m so grateful for all of them.
I acknowledge that friendships are hard in general, but I wanted to share with people who don’t know what adding that little spice of chronic illness can do to totally shake up that aspect of our lives. Thank you for reading my second post, I appreciate it and all the kind comments I’ve gotten so far! I’m going to continue to update this every other week, so keep on the lookout!
With love,
Steff