Can I work on creating an etsy shop while on disability?
August 9, 2013 12:23 PM   Subscribe

I have just been diagnosed with MS and my doctor has told me the tests will document my issues, and that it will endanger my livelihood.

The idea of going social security disability sounds horrible to me. Will I be able to work a little? Will I be able to start an etsy business?
posted by squirbel to Health & Fitness (19 answers total) 3 users marked this as a favorite
Anecdata: I know 3 people with MS of various sorts and severities and they all work. Are you an airline pilot or something like that? In what industry is your livelihood?
posted by small_ruminant at 12:27 PM on August 9, 2013

Response by poster: I work in technology repairing robots. :(

My memory is what is most affected, and I have seizures. Mine is relapsing remitting.
posted by squirbel at 12:29 PM on August 9, 2013

I have a friend in her late 50s who has MS and continues to work, although just part time. Her job, which is in retail sales, keeps her on her feet all day, which is (I believe) why she doesn't work full time.
posted by janey47 at 12:33 PM on August 9, 2013

MS varies pretty widely in symptoms, intensity, and manageability. I have a relative, a doctor, who was able to work for quite a while (I believe she's mostly retired now, but she's in her 60s.) I have another friend who worked, went back to school and got her masters, and incidentally picked up black belts in two separate karate styles after diagnosis. So it's certainly possible that you can keep on truckin', but it's also not guaranteed.
posted by restless_nomad at 12:41 PM on August 9, 2013

You can call the Social Security administration and ask: 1-800-772-1213. You don't need to be afraid to call, it's confidential. They're not going to know what Etsy is but you can ask something like "If I am approved for Social Security Disability, can I sell crafts? Is there a limit to what I can earn in casual income while on disability?"

The idea of going social security disability sounds horrible to me.

Then you should be prepared in advance for the fact that the application process is even more horrible. You should expect to apply, be declined, and then appeal the decision with the help of a lawyer working on a contingency basis. Unfortunately, that is the standard cycle now. It can take a very long time and to whatever extent possible you should plan for that.
posted by DarlingBri at 12:43 PM on August 9, 2013 [8 favorites]

My father has been on Social Security disability since, gosh, 1994? He has been intermittently self-employed in that period of time. SSDI prohibits "substantial gainful activity" but it does not prevent all income-generating sources.. There is a reduction of benefits based on income below the SGA level. I believe there are also provisions for intermittent disabilities, where you can suspend benefits while you work for a few years and then start claiming them again.

There was definitely a lawyer involved in the process of applying for social security disability.
posted by muddgirl at 12:44 PM on August 9, 2013 [1 favorite]

Memail me.
posted by infinitewindow at 12:45 PM on August 9, 2013

Best answer: I strongly urge you to get in touch with the nearest branch of the National MS Society before you make any life-changing decisions. They can connect you with advice from disability law experts, counseling, and peer support groups for the newly diagnosed. It's easy to succumb to panic and just throw up your hands and quit working, but that's not necessary. Understanding the disease and its potential effects on your life is a Big Deal that requires compassionate and knowledgeable advice.

Anecdotally, I have MS (diagnosed 11 years ago) and I still work full time as an RN, which is a very physically and intellectually demanding job.
posted by jesourie at 12:46 PM on August 9, 2013 [15 favorites]

In addition to jesourie's excellent suggestion, you may also have short- and/or long-term disability insurance through your current job, which is something to look into now.
posted by pie ninja at 1:12 PM on August 9, 2013

I agree with jesourie. My son-in-law has MS and he repairs electronics machines, as well as some travel. My daughter got involved with the MS society and they go to meetings and she talks to the doctors -- she also goes to the dr with him to record information in case he forgets.

The biggest thing is to take time and learn about it, such as he has trouble with hot weather so they have an air conditioner, keeping an eye out for flare ups and letting the dr know. He also takes some vitamin supplements based on some of her talks with a neuro doc, I think B & D vitamins (but with the dr's knowledge).
posted by Marie Mon Dieu at 1:16 PM on August 9, 2013

I have MS. Diagnosed in 1988 with RR. It is very scary in the beginning trying to sort it all out. Contacting the MS Society is a great idea. They have people that can answer all of your questions, or at least most of them. I would start with them.

Please memail if you would like to talk more.
posted by cairnoflore at 3:31 PM on August 9, 2013

And yes you can earn money on SSDI. The problem with earned income starts if you have private disability insurance like I do. I cannot even sell anything on Ebay. No earned income period. My private insurance ends in 5 years and then I can earn a bit of money.
posted by cairnoflore at 3:35 PM on August 9, 2013

In order to obtain SSDI you must be earning $0.00 to start, but once you are on it you can earn up to a certain amount.
posted by decathexis at 4:26 PM on August 9, 2013

I know a number of people who live with MS. All of them, when first diagnosed, had uninformed general practitioners (who probably hadn't updated their MS knowledge since med school) tell them things like "Oh, you'll be in a wheelchair within five years" or "You'll need to quit your job and go on disability". Those predictions were wrong. MS treatment has come a long way, and as a result my friends are all still working in challenging, interesting jobs, many years after diagnosis (although they do benefit from flexible hours to help them manage their fatigue).

Please don't make any decisions about your livelihood until you've seen a neurologist with a special interest in MS and discussed your treatment options. The newer disease-modifying medications are excellent and can dramatically improve function while reducing the chance of a relapse. There are also psychological therapies which can help you learn to manage (and even improve) your cognitive and memory symptoms. With good treatment, there is every possibility that you will be able to continue in your current career - remember also that if your MS causes disability, you are entitled to have that disability reasonably accommodated at work.

Definitely call the MS Society - they'll have all the info you need.
posted by embrangled at 4:33 PM on August 9, 2013 [3 favorites]

In case I wasn't clear, my SIL goes to a specialist as described by embrangled and takes the treatments offered and also takes supplements (which they said can't hurt and may probably help). He's been diagnosed for a while now and although he thinks he may be in a wheelchair someday, he's been continuing to work for the past 4-5 years since his diagnosis. His employer is very accommodating and they have another person there with MS. I think he's gotten a promotion since then as well, plus he traveled to the Netherlands for more training.

They also have a plan in place just in case, for disability and caretakers, etc. As my daughter works full time and goes to school and they have a child. He's pretty okay with it, having been an EMT and a father who was disabled due to other health issues. You have to work with what you have and make your decisions from there, but a specialist is great, my daughter is very pushy and has gotten him some great treatments.
posted by Marie Mon Dieu at 5:08 PM on August 9, 2013

What you are referring to, SSA calls work incentives. The rules regarding work incentives, especially for the self employed and especially for people early in the process, can be complicated--too complicated to be addressed by calling SSA's toll free number. Don't do that. They are more likely than not to give you bad advice, not out of incompetence (though that can be an issue), but because there are too many variables of which they are unlikely to be aware.

Here is a link to SSA's guide to work incentives: The Red Book, which will give you some idea as to how SSA views work incentives.

When the time comes, after you've been found disabled, and want to decide to try to work, go talk with someone face to face in your local Field Office.

But here's hoping that is a long way off.
posted by pasici at 5:55 PM on August 9, 2013

I have MS; my first symptoms were more than twenty years ago and when I was diagnosed a few months later, I was feeling much as you are. In fact, I have missed a grand total of something like six weeks' work in that time due to the disease. I suspect many of us will have missed that much due to colds, hangovers, cramps or something equally mundane in two decades.

Contact the MS society and feel free to memail me for advice and support.
posted by ricochet biscuit at 8:40 PM on August 9, 2013

First, take a breath. Because MS presents in so many different ways and has so many different courses, the initial diagnosis can lead to a lot of catastrophic thinking. So lets focus on the symptoms you mention.

I have had MS for 22 years. Back then the cognitive symptoms were not really recognized, all of the information I got about disease progression focused on mobility and the like. Back then I was also in grad school in cognitive psychology, so for me a bunch of brain lesions made me worry more about losing my mind. Luckily, in the past two decades the research has increasingly recognized the cognitive degradation that can accompany the disease, and there are also many highly effective treatments that did not exist at that time.

So what I would tell a friend is to immediately see an MS specialist if you can, otherwise spend time with your neuro. I am assuming that you have baseline MRIs, but you should also request baseline cognitive testing. I just redid mine a few months ago, it involves sitting in a room and doing tests and puzzles for a few hours. If you like working with robots it is probably the kind of thing you would find fun.

After baseline measures, immediately start taking one of the drug therapies. The specific choice is between you and your doctor, but you will want to make sure not only to focus on reduction of exacerbations, but also in the drug's ability to slow lesion growth.

Even if you have a slowly progressing disease, if you already have some memory problems they will also be compounded by age. There are many good strategies for dealing with memory issues so you should investigate those as well. I suggest Getting Things Done (thanks askme) -- as a system it means that my work is all organized and stored in my smartphone and one the web (nirvanahq). The important thing is to use technology to assist your memory. The memory and processing ability issues are also greatly affected by sleep and stress.

Which leads to the step lots of other people recommended, find a community. The first couple of years I found the support group where I lived to be good conversation and I learned a lot. There are also online communities (patientslikeme). You posted here so you know that there is a lot of support out there. You'll be surprised at how much you will be able to weather. Feel free to send memail if you want to sidebar.
posted by cgk at 12:54 AM on August 10, 2013

Response by poster: Thank you everyone!
posted by squirbel at 7:58 PM on August 10, 2013

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