How do I get people to understand?

[twiztidchic]

I've been at my job for 5 years now. And I've become friends with a lady in my office. I just had a relapse and had to go off of work for a month today. So far, she has said things like, "I've read that people can work when they have a flare". I tried to explain to her that we are all different and that sometimes this is going to happen.

So far, I've had 3 episodes and they have progressively gotten worse. All were within the last 6 years. The 1st, my Dr didn't suspect MS so I didn't know that's what it was until quite recently. The last time I was off for a few months. And I was outcasted at work when I returned and all of a sudden I had been a bad employee and they made me sign a form saying I did this and that. I needed to work and keep my job and they scared me into signing it. A month later, all of a sudden, I'm a great employee who deserved a raise!

Fortunately, this time, I have a new supervisor and she is very understanding and has helped me through process. However, she is in another office. I am using a space in an office close to my home. So the woman I'm supposedly friends with sits right in front of me still. How do you get people to understand this disease.

Today she texted and said "maybe this won't happen again". That just shows me she really hasn't researched as she said she has. I had to explain to her that that's not how this disease works and that with my current pattern, it will happen again.

I haven't started treatment yet but I explained that after I did, the relapses should become further apart and less intense, hopefully. But as you all know, this is really an unreasonable assessment of the reality I am faced with. Sorry for the long diatribe but there was a lot to explain!

[Mynamegoeshere1]

When people annoy me that bad, I'd just tell her it's illegal to ask you questions about your health that are covered under the ADA. If she doesn't stop, have HR stop her. She is harassing you. I got that at first too. Unfortunately, ive never been able to return to work since my diagnosis. I just had turned 32 and am classified disabled forever!

[twiztidchic]

Thanks, I'll try that if she makes it an issue. I'm just worried about going back Monday now. I don't need the added stress in my life. It almost makes me want to not go back to work. Almost! I love my job and I will work as long as I am able. Since this is destroying my left hand, I'm not sure how long I will be able to. But I'm taking it day by day

[Mynamegoeshere1]

You are protected under the ADA. If your hand is not working, they have to make reasonable accommodations for you. They have tons available. Even voice activated typing. Look on the ms website. They show a lot of occupational tools to help you work as long as you are willing and able. I sure hope this gets better for you.

[hunterd]

WELCOMETWIZIDCHIC!!!!!!!!!! great to have you here, but am sorry why. As far as the whole work thing goes, an occupational therapist could give you some helpful pointers to save energy. Voice recognition software has been very helpful for me.

As far is making others understand, maybe try using this spoon scenario. That's where you have 10 spoons at the beginning of the day and different activities use a different amount of spoons. When you're all out of spoons you run into a brick wall. That has been my most effective way of telling people about my fatigue. I have still had people tell me," I get tired too". Sometimes no matter how you explain it they just won't get it. Maybe try telling them," imagine you been awake for a week straight", and hopefully they will understand.

Check with your local office of vocational rehab, they may help pay for things you need to do your job if your employer isn't willing. At one time they paid for a hearing aid to help me continue to work. And like was already said, the ADA is there to help you. GOOD LUCK.

[twiztidchic]

Thanks for all of the advice. I know there would be no problem with them helping me with anything I may need to do my job. I am even able to work from home when I'm not having great days. The Dr is trying me on Provigil. However, my Ins Co needs him to contact them regarding it. The pharmacy said it could take up to 2 weeks for them to approve. I hope that's not the case. Tomorrow is the big day! It's been 32 days since I've been in. Going to take it slow and day by day.

[twisterred]

Regarding the spoon theory, be sure to mention that some days there are fewer than 10 spoons.
Some mornings I wake up with only 5 spoons worth of energy.
Sometimes I only have 1 spoon.