Recently diagnosed

[Scb27]

I’m 26 with a birthday next month and was recently diagnosed with Lupus. (My grandmother had it) and I had Mono twice which is what my doctors are thinking triggered it. I haven’t started Plaquenil yet as my rheumatologist still wants do a muscle biopsy to rule out severe muscle involvement. And I need to get my eye exam. My biggest issue is since we’re waiting to treat which I’m okay with since any treatment would hide inflammation. I’m struggling to work, I work full time and a supervisor in retail. I’m always on my feet dealing with stressful situations or customers which then will trigger a flare. Or sometimes I wake up in the morning and I’m running a random fever and am so exhausted I can hardly drive. Or I’m in so much pain I can hardly move. The anxiety of my work and at the time undiagnosed illness was causing me to be sick every morning I have to work. I guess my question is how have anyone else balanced their illness with work? Andy tips or suggestions, my PCP is going to do a reasonable accommodation request for me but any coping strategies would be appreciated.

[lupus-support1 Administrator]

I am sorry to read about your situation and wish I could say something helpful.

Everyone is different and how one copes is only part of the problem. It depends on whether your symptoms can be controlled sufficiently so you can continue working in the way you have.

Or, you may have to consider how the job affects you is causing a problem with your health, that shouldn't be ignored. The worse case scenario is to to consider changing your job because it is too physically or mentally exhausting. It is far too early to consider this because you haven't started Plaquenil. It will take at least 3 months for you to feel any benefit. You will probably start with 1 tablet, to see how well your body tolerates it.

If you have a good relationship with your boss, you should consider explaining the situation, with the possibility of needing some time off work, or altering what you need to do ie sick leave. Don't wait until you are so ill, you would need more time off! Try to find ways of doing your job without all the physical & emotional stress, if possible.

I will send you a message where you can find some helpful information & support. Support is THE most important aspect, physical & emotional. Do you have family & friends on whom you can rely? You might also want to talk to someone not connected to you, someone who can be independent & you can say what you really feel without worrying your family.

You can contact me anytime.

With good wishes,

Ros

[Scb27 in reply to lupus-support1]

That’s what I’m trying to do now. Most of my job can be done from home but my immediate supervisor is not very understanding. I can work but my job has me on my feet a lot and I can’t keep up with the physical demands of it.

[lupus-support1 Administrator in reply to Scb27]

I gather you are in the US? If so, it may be different but I would see your PCP and ask for a medical certificate showing you have a medical condition and your requirements. If your supervisor is merely unaware, this may help. If your supervisor is being mean, you have to decide as to what you should do next. I can’t give advice other than to say that your health is more important.

With good wishes,

Ros