Torn about working and disability

Hello, (Christine)!

At the risk of stating the blatantly obvious, you are dealing with a lot! I can't say for certain whether you will ever feel 'normal' again. I wish I could. I wish I could wave a magic wand and let every person feel normal (or, even better, wave a wand and rid the world of all diseases and illnesses and conditions). But, I can't do that.

I think trying to find a new normal is a realistic goal. And that's not to say that you won't feel more like yourself in the future. You can have hope while still practicing contentment (for lack of a better word) where you are today. I'm not saying you have to be content while you are in pain. I mean, who feels content in those situations?

As far as the work vs disability question, well, that's a hard call to make. I think sometimes we know ourselves best and sometimes we need someone close to us to say, "Hey. Maybe it's time to step back from working so much." And a lot depends on the kind of work you do and how accommodating your employer is, too.

Will you feel better? Probably. Will you return to where you were before your latest diagnosis? I can't say.

But, I sincerely hope each day is a better day for you and that you continue to see improvements in your overall health.

Best, Erin, Team Member.

Christine you are not alone in making such a difficult decision. You are physically and mentally dealing with so much. It can really be overwhelming trying to find a normalcy that we are okay with.

I was told in my mid 30s that if I continued to work I would be dead I was so sick and couldn’t work. This was one of the heaviest blow to my ego on my lupus journey. I had no choice but to get on disability. Still on till this day and no longer regret it. I can’t work in a traditional way and I don’t even try to. I felt so conflicted like you and found that I had to let go of the job defining me and take care of me.

I will say this…. You WILL feel better. Because lupus and everything else you are going through as well as life, has ebbs and flows of pain and relief. You WILL get to a sense of normalcy that feels good for you. It WILL take some time for you to find those areas of peace for sure.

I’m holding space for you to find that space between pain and feeling just a little better to get to what feels good for you. Keep fighting to get there. I am so glad you found this forum there are menu answers and support here.

~Racquel~ Team Member

I am a CNA at a children's hospital. I was very hands on and loved my families until one day my legs buckle while holding a baby. I realized I have to find a better job. I was luck to find a job within my hospital that still has me saving lives. Each year since 2021 I have developed a new condition or unknown illness putting me down for months. Due to my age I was told disability is not an option cause I can do a sit down job which I have. Last year I developed pericarditis and have been having lung and heart problems since. They don't know the cause just like the blood clots I only develop in my brain. My job is really great about my disability, so I am a luck one. I keep getting sicker with no known reason thus disability will be hard to get. I am blessed for my job and coworkers. We make a joke of my sick days and say I bubbled out for the week