How AS Has Affected My Financial Situation

By Steff Di Pardo

2 min read

I’ve struggled a lot financially since my symptoms of AS first started. As I’ve mentioned before, I had to quit my job, which has left me without a steady income for the past 3 years now.

Leaving work

I worked at a restaurant part-time before my AS appeared. Once I got the symptoms, I pretty much immediately had to leave work and not go back. The job was too stressful and hands-on for me to be able to keep it. I was also bedridden for 3 months, so that wasn’t helping either.

When I initially left work I wasn’t entirely sure what was going on. I was put on medical leave and was able to apply for Employment Insurance for being sick/injured. It only lasted for 3 months, but it was a big help in the beginning.

After the 3 months, I was left to fend for myself. I had quit my job. Whether I wanted to apply for disability, get a different job, or stay unemployed was up to me.

Applying for disability

I eventually decided to try and apply for disability. The process is difficult and time-consuming, but I ended up finishing it. It took a few weeks to hear back, and when I did, I was denied.

I was told I could write a letter to appeal their decision, so I did. I heard back a few weeks later only to be denied again. By that point, I had lost hope and gave up trying to get accepted for disability.

Working from home

I still can’t work a part or full-time job. The fatigue is what plagues me the most with having a job. There’s no way I could handle one, not right now at least. The pain I can mostly handle, it’s the fatigue that’s the real killer.

Over the past 2 years, I’ve found little editing or writing jobs here and there. I work from home and on my own time, and it seems to be what works the best for me right now.

It’s nowhere near what anyone would call a livable wage, but at least it’s something. I’m extremely lucky that I still live at home with my parents, otherwise I don’t know what I would have done at the time. I guess I would have moved in with them anyways.

The future

I’ve thought a little bit about what jobs I would like to try when the time comes. I’ve wanted to try reception for a while, and I feel like that could be a manageable job for me. I know I can’t go back to a restaurant or do anything in retail. It would be too much for me.

I’m not sure when I’ll be ready to work again, but there’s a lot of things to consider when thinking about getting back into the workforce.

How has AS affected your financial situation? Did you have to leave work in order to take care of the disease, or were you able to continue working? Let me know, it’s always so different for everyone!

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MICHAEL 7500 Member
steff i was able to retire 30 years as a public worker a job i enjoyed, very active job, some days dont know how i got through the day with the pain but i <a href='http://did.felt' target='_blank' rel='noopener noreferrer ugc'>did.felt</a> it was good to be around people and i was going to have pain whether home or <a href='http://work.all' target='_blank' rel='noopener noreferrer ugc'>work.all</a> a.s. patients have different severity so its not one size fits all .it breaks my heart that you are in so much pain you seem like such a beautiful sole, and i so enjoy your writing maybe this is your destiny.
Lisa Marie Basile Moderator & Contributor
Hey Steff. Thank you for this. AS made me leave my last job (actually just wrote a post about this) which paid a nice hefty salary. I left to freelance, take a massive paycut, and walk into the abyss of not knowing. It sucks. But my body required it. In some ways it makes me grateful that I wasn't stuck on a meaningless hamster wheel. On the other hand, freelancing can be difficult. I do financially support myself so I have to do what works. Solidarity!
Fiona Olegasegarem Moderator
Hey Steff, thank you for sharing on this topic - can definitely relate! Pre-AS I worked as Musical theatre performer/actor and did lots of teaching at a dance school, schools, and as part of performng arts companies. The AS means that I had to step back from dance, and also limited what performing jobs I can take - as well as the condition, I have lots of hospital appts and it's not feasible to tour. I had to step back from the teaching jobs - especially the 8 hour days at dance school and in schools, as they really took their toll on me - I was so fatigued and it wasn't the best thing for me or my students. It was a real hit to my income. I am incredibly lucky that my fiance has a stable job that covers most of our household - but it has been a hard thing for me to come to terms with! I now teach privately from home, and at another studio nearby, and that has made a huge difference, as it's much more flexible and my students' parents are understanding! What I've found to be helpful is thinking about what skills you can offer - and how they can fit in with your situation! Wishing you lots of luck!
rafael-laranja Member
AS has influenced my financial life by spending more on treatment and, I confess, it is these expenses that allow me to continue working. I am a university professor and AS made me reduce my working hours as well as the intensity. I needed to readjust myself at work in order to reduce demand while maintaining dedication, that is, I do less but I do it with dedication. I had to adapt at times, because AS gave me a gift for chronic tendinopathy in the shoulders, despite doing acupuncture, water aerobics, muscle strengthening and drug treatment for infliximab. So, certainly, my financial health was negatively affected, as I had to decrease my work rate.
1. Katie Phares Moderator
 Hi <inline-mention user-id="2394756" username="rafael-laranja"/> ! Thank you for sharing. Balancing the finances for healthcare and living can be extremely trying especially when one has to reduce their work hours due to pain. Have you tried physical therapy for you chronic tendinopathy? How have you been hanging in there the past few months? Best, Katie

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