How I Balance My Social Life With AxSpA

By Steff Di Pardo

2 min read

It’s no secret that AS has changed my life forever. Five years ago I was a completely different human. I was able to work, go out places, and see people often. I don’t know how I did it.

Nowadays things look a little different. I’m unable to work outside of the house, and I only go out and see people when my pain and fatigue allow me to.

I want to share how I balance my newer life – my life with AxSpA.

Dating with ankylosing spondylitis

As a young adult, dating is a huge part of my life. I’m on the dating apps and talking to people, but I have to navigate the dating world a little differently. It takes a lot of energy to go out and meet people!

What I’ve been doing for a few years now is only meeting people in real life that I’ve talked to a lot. Whether that be on the phone, Facetime, or just texting for a week or two, I won’t waste my energy going out meeting people who I’m not sure I’ll mesh with.

I make sure that I at least get along with them a little bit first, to make going out on a date worth the energy. That kind of sounds bad, but that’s how I operate when it comes to dating!

Seeing friends

When it comes to seeing friends, it’s a little different. I obviously want to see my friends often! I try to balance seeing friends about once a week or so. I think it’s really important for my mental health to be able to see people other than my parents.

Whether seeing my friends means having them come over and hang out in a low-key setting, or going out for dinner or a short shopping trip, it always helps to see them. I just make sure to spend the few days leading up to seeing a friend relaxing and taking care of myself - because seeing people - even if they’re friends - can be tiring!

A big symptom of my AS is fatigue, so I spend a lot of time resting.

Rest is so important!

I always try to tell myself that rest is productive. I have a sign in my room that says it just to remind me often. In our culture, rest is seen as being lazy, and that’s simply not true. Especially for those of us with chronic illnesses. Rest is extremely important and should never be seen as being lazy! We need it desperately!

In order to balance being social, I need to be able to rest in the days leading up to the event, and the one or two days after. I need to be taking it easy in order to save my energy and help my overall fatigue levels.

I’ll spend a lot of time in bed and make sure I’m taking naps. I don’t want to overdo it and be unable to see people - because seeing people is so important for my mental health!

How do you balance your social life with your AxSpA?

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Anna Samson Moderator & Contributor
I can relate so much to this! I go about managing my social life in the same way. Resting for a couple of days before and after going out. I'm doing social things about once or twice a month right now, but that's up from just a couple of months ago when I could only go out once every few months. This is a good reminder that we need rest and it is nothing to feel bad about.
maisi Member
<inline-mention username="Steff Di Pardo" user-id="2109129"/> Unfortunately, many of my friends have chosen not to get vaccinated, let alone boosted, and do not understand the "fickleness" of my symptoms. For so long, my disease was consuming....and my friends eventually stopped reaching out. The new place for me: building new friendships. 
1. Rebecca C Moderator & Contributor
 <inline-mention username="maisi" user-id="2108559"/> - this must be so hard on you. I understand why you remain distanced. I send strength your way. Wishing you stronger & healthier friendships in the future. Warmly - Rebecca (comm advc)
2. Nicky Flikas Moderator
 Hi @maisi, I can relate with friends eventually stop reaching out. I have had the same happen with family also. It hurts so much. But like you said positive way is you can make new friends and true ones that will understand you. You deserve to be surrounded by people that will understand and love all of you. I am thankful for this community. Every time I am having a hard time I come on here or on instagram. We are always here and sending you hugs, Nicky (Community Member)
James Hollens Moderator & Contributor
Hi <inline-mention username="Steff Di Pardo" user-id="2109129"/> , I think these are such great tips for things that so many of us living with AxSpa & other chronic conditions definitely have difficulties with. It sounds like you some great ways of balancing your condition and social life so thank you for sharing them and the reminder that there is nothing to be ashamed about resting when we need to! Wishing you well, James (Community Member)
Julie Vallortigara Moderator & Contributor
Hi <inline-mention username="Steff Di Pardo" user-id="2109129"/> This is such an interesting article and I am with you on many points you make! I particularly like what you say about resting, and how it is perceived as being lazy in our culture. That's so true and also so wrong! I keep on reminding myself that resting, napping, going to bed early is productive and working for me to enjoy doing things later. Now I am working from home most of the time, I have started to have naps just after lunch, for 20 minutes, and really gives me a boost of energy for the rest of the day. The way to balance social life and spending time self care is key for me. Like you, I do plan my gathering with friends and rest in between so I don't exhaust myself 😉 Because, yes seeing friends is tiring for sure!! And the dating side of things is also tricky to manage. I think selecting people you are going to meet is smart and makes sense. We don't have energy to waste! I hope you are keeping well these days. Take care, Julie.