Employment/Dating with Autoimmune Disorders (POTS, SFN, etc.)

Posted by wolfbauer @wolfbauer, Jun 16 8:10am

I went to college going for dual majors in Doctorate of Pharmacy and B.S. in Biological Sciences, and was in a near fatal car accident six weeks before finishing my classes (March 2011) and ended up having to return home and have not been able to finish. I've worked in pharmacy since I was 16 (for 13 years). My symptoms got so bad, my last job was a clerk at a gas station at the end of my street, and I had to quit as I was unable to stand or stock the cooler without ending up in severe pain and struggling to walk after my 4-5 hour shifts. I've asked pharmacies if they could make a reasonable accommodation under the ADA, allowing me a chair since I have POTS and it's very taxing. I was told no by just about every company you can think of (the reasoning being that I would need to move around to different stations. I understand that, and don't know why I couldn't move a stool with me… It wouldn't get in the way of anyone else. I was even told that pharmacy isn't the field for me anymore… I'm heartbroken and extremely discouraged!). Has anyone experienced this same inability to find a job that can accommodate our disorders and needs? I've tried everything from pharmacies to ocean stare job lot, and no one is able to accommodate. I currently am signed up with every job recruiting website I can find as well as Google alerts for jobs. I found the perfect remote job close to me (I live between Albany, NY and the MA/NY border), but it requires that I live in MA and am licensed as a pharmacy technician in MA.

Does anyone have suggestions of ways to get an income? I've been denied SSDI (I need to apply again as my health has declined). What does everyone do for a job, or how do you make ends meet being unemployed? I just turned 35 and I'm living with my parents and completely reliant on them financially and often for support in doing daily tasks. All I want is to have a studio apartment, a job (any job) so I don't feel so useless (not to mention living the same day over and over again without any sense that things are going to change is awful! My depression and anxiety are peaking… I feel like I've lost my self-identity, my confidence, any pride or hope. Dating isn't really an option when one has nine cents in their bank account, lives with their parents, and can't do the active things/hobbies one used to [I have severe gastroparesis and am so worried if I ever do go on a date again, I'll end up having to excuse myself from dinner and get sick in the bathroom, unable to eat. As a second part, does anyone have any dating tips for those of us who are physically limited or have their condition exacerbated by just doing normal everyday things?]).

I thought after the two years of severe COVID-19 and the availability of vaccines (I've had all four shots), that I'd be able to get out there and work and date, but it didn't work out like that. I can't even imagine how I can work a job and go to all the doctor's appointments I have with specialists and all the tests I have to go in for. It's already like a job. Before COVID-19 when I had a home infusion nurse and all my specialists were arranged, I had weeks where I would have three different appointments in a day, and on multiple days in the same week. It's crazy!

Am I stuck with my parents, or does anyone have any suggestions? I'd really appreciate any ideas!

I hope you all are doing well and hanging in there and feeling the best possible!

Sincerely,
Wolf

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@wolfbauer Hi Wolf. I’m so sorry for all that you’re going through. I can truly empathize with your feelings of depression and hopelessness. I also have POTS, SFN, autonomic dysfunction. For me the “flares” come and go but come without warning, so I know what you mean about fearing a flare while in public, at work, on a date, etc. I have a few thoughts to share….
As far as a job goes, I recommend focusing on a job that offers working remote/from home. Many companies transitioned to that after COVID and many are hiring. Also, as another person mentioned, perhaps you consider a disability attorney/advocate. Your doctor should be able to help you with the paperwork that demonstrates how severe your condition is and that would help you qualify for SSDI.
Have you been to cardiac rehabilitation? Or pain management programs? I just recently (this week!) had my first appointment with a cardiac rehabilitation doctor at Mayo. His job is to work with me on exercises and strengthening techniques that are safe and therapeutic specifically for POTS. As you know, exercise with POTS isn’t just difficult, it’s scary and potentially dangerous. I felt very motivated and hopeful after leaving my appointment. The goal is to improve my quality of life and as the doctor explained things, I’m very optimistic that his treatment will help. I’ve also been referred to Mayo PRC (pain rehab center). I’m not on the schedule yet but as I understand it, it’s an intense 3 week program designed to help those like us manage life with our conditions. I’ve heard very good things about it. A quick google search will take you to more information, testimonials, etc.
Lastly, dating. I’ll be honest, I didn’t even like dating as a “healthy” person. Now complicate it even more with these conditions and I’m tapping out! 🙃 Really though, I suggest googling it. You will find peoples stories, not only as a person with a condition, disease, disability, etc. but also from people who have/are dating someone with a condition. There may even be dating apps for people with conditions, I’m not sure.

If you don’t mind sharing, what medications do you take or have you tried? I’ve tried many and none really help the pain, although I found Amitriptyline to be helpful for depression and for some it also helps with pain. I tried a beta blocker for POTS and it’s also supposed to also help with anxiety but I didn’t do well on that medication. Everyone is different though, so it may work better for you.

I’m not sure if you’re new to this forum, but I find it very helpful to have people to talk to who really know what it’s like to live with the same conditions. It’s a great place for support and information, tips, etc. You’re in good company here. There is a page specific for neuropathy that you might want to check out too (probably one for POTS as well): https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I hope you find ways to cope and have support that will help you navigate through this. I’m here if you’d like to chat more, as are many others in this forum!

Wishing you well,
Robyn

REPLY

Wolf,
You have a tremendous base of knowledge regarding medications and how they affect the body.
My Sons best friend just graduated from Pharm School and now does research for Astra Zeneca! He works remotely and loves his job.
Start looking and you will find your new calling. I know the anxiety is high with these autoimmune diseases, I started Accupuncture and it’s amazing how much energy I now have and my anxiety is resolving.
I also changed my diet to anti inflammatory Mediterranean and do progressive relaxation.
I’m a Nurse and had to stop working so I started volunteering for the EPA hiking and helping to keep our parks clean and safe.
It turns our world upside down but we can create a new life of self care and finding joy in what we can do.
Take care

REPLY

Could you take classes remotely to complete at least one of your degrees? Since the pandemic, universities have become more flexible and are offering more courses online. There may be scholarships for people coping with disability and for those scholarships chronic pain may qualify as a disability. Having a degree would increase your employability and reassure prospective employers that you can still be a productive employee despite your illness.
Have you tried finding employment with a compounding pharmacy, which might be able to accommodate your needs more easily than a busy retail pharmacy?
Unfortunately, with long COVID, many young adults are living with chronic pain. I imagine you could find interested fellow chronic pain sufferers in online dating forums, if you are open about your current situation. The key is to keep trying. I hope this helps!

REPLY
@pacer3702

Could you take classes remotely to complete at least one of your degrees? Since the pandemic, universities have become more flexible and are offering more courses online. There may be scholarships for people coping with disability and for those scholarships chronic pain may qualify as a disability. Having a degree would increase your employability and reassure prospective employers that you can still be a productive employee despite your illness.
Have you tried finding employment with a compounding pharmacy, which might be able to accommodate your needs more easily than a busy retail pharmacy?
Unfortunately, with long COVID, many young adults are living with chronic pain. I imagine you could find interested fellow chronic pain sufferers in online dating forums, if you are open about your current situation. The key is to keep trying. I hope this helps!

Jump to this post

Pacer,

For my doctorate, I cannot, and unless I can find a Physics Course WITH Lab that is available online and accepted by URI, I won't be able to finish my Biological Sciences B.S. either. I've been taking a free coding course through edX via Harvard and MIT for coding, but have just been wiped. Living at home, I'm torn between trying to get better and get in a place where I can be stable, and also be amenable to my parents and get a job and try to move out. I have been applying like crazy, had several calls and phone interviews this week, and as a result, I haven't slept or kept food down the last three days or nights at all. I'm really struggling right now and in a lot of pain. If I have a good day mentally where I can motivate and do something, as long as I'm going, I'm good, but if I try to eat, I'm so wired, even with all the meds, nothing stays down. I'm supposed to have an interview after 1pm today, posssibly zoom, and there's no way I'll even be able to move to simply shower I'm doing so poorly. I don't know what I'm thinking sometimes, and without access to a therapist or psychiatrist… it makes things so much worse. Plus I'm 35 being treated like a 13 year old all over again. It's a living hell. Sorry for venting, but I got through the day doing what I could, and when that was over and I couldn't focus or do chores or even be in a tolerant mood to talk to people, everything just crashed. I feel like this is going to be my life for as long as I am alive, and it's hell right now. Because my parents picked up my RXs at CVS because I wasn't feeling well, and looked at all the info and talked to people about the meds (that I've been on for years), my dad took the battery out of my car for two months. It's finally back in, but only if I give him my key when he goes to bed because he thinks the meds are going to make me want to go out and drive. It's surreal! I feel like I'm regressing, I have no motivation to do anything except avoid feeling awful, and when I do get a spark, it's often aimed at a method to get out of my current living situation/get a job. I'm just lost.

Thank you for listening, I'd like to hear about you too, I'm sorry I'm just wiped, please message again if you'd like!

REPLY
@cantek

Wolf,
You have a tremendous base of knowledge regarding medications and how they affect the body.
My Sons best friend just graduated from Pharm School and now does research for Astra Zeneca! He works remotely and loves his job.
Start looking and you will find your new calling. I know the anxiety is high with these autoimmune diseases, I started Accupuncture and it’s amazing how much energy I now have and my anxiety is resolving.
I also changed my diet to anti inflammatory Mediterranean and do progressive relaxation.
I’m a Nurse and had to stop working so I started volunteering for the EPA hiking and helping to keep our parks clean and safe.
It turns our world upside down but we can create a new life of self care and finding joy in what we can do.
Take care

Jump to this post

I've applied for a ton of remote postions… they ended up not being remote. I was heartbroken! Diet in general is difficult as I have severe gastroparesis and the pyloric sphincter just clamps down and I end up vomiting. I do little things like photography, write, design/invent things on paper, to keep my mind busy, but I've lost interest in a lot of it and am dead broke. Self Care is HUGE, and I'm having trouble getting the pieces to come together. I'm still waiting to hear about MRIs that were supposed to be taken twice a year, and haven't been done before covid. everything is so hectic, everyone is in a daze! I've been applying for jobs, but all the work and stress of it has thrown me into a huge flare, just again telling me, why do I even bother if I won't be able to do the job.

Thank you for listening, I'd like to hear about you too, I'm sorry I'm just wiped, please message again if you'd like!

REPLY
@boltz7555

@wolfbauer Hi Wolf. I’m so sorry for all that you’re going through. I can truly empathize with your feelings of depression and hopelessness. I also have POTS, SFN, autonomic dysfunction. For me the “flares” come and go but come without warning, so I know what you mean about fearing a flare while in public, at work, on a date, etc. I have a few thoughts to share….
As far as a job goes, I recommend focusing on a job that offers working remote/from home. Many companies transitioned to that after COVID and many are hiring. Also, as another person mentioned, perhaps you consider a disability attorney/advocate. Your doctor should be able to help you with the paperwork that demonstrates how severe your condition is and that would help you qualify for SSDI.
Have you been to cardiac rehabilitation? Or pain management programs? I just recently (this week!) had my first appointment with a cardiac rehabilitation doctor at Mayo. His job is to work with me on exercises and strengthening techniques that are safe and therapeutic specifically for POTS. As you know, exercise with POTS isn’t just difficult, it’s scary and potentially dangerous. I felt very motivated and hopeful after leaving my appointment. The goal is to improve my quality of life and as the doctor explained things, I’m very optimistic that his treatment will help. I’ve also been referred to Mayo PRC (pain rehab center). I’m not on the schedule yet but as I understand it, it’s an intense 3 week program designed to help those like us manage life with our conditions. I’ve heard very good things about it. A quick google search will take you to more information, testimonials, etc.
Lastly, dating. I’ll be honest, I didn’t even like dating as a “healthy” person. Now complicate it even more with these conditions and I’m tapping out! 🙃 Really though, I suggest googling it. You will find peoples stories, not only as a person with a condition, disease, disability, etc. but also from people who have/are dating someone with a condition. There may even be dating apps for people with conditions, I’m not sure.

If you don’t mind sharing, what medications do you take or have you tried? I’ve tried many and none really help the pain, although I found Amitriptyline to be helpful for depression and for some it also helps with pain. I tried a beta blocker for POTS and it’s also supposed to also help with anxiety but I didn’t do well on that medication. Everyone is different though, so it may work better for you.

I’m not sure if you’re new to this forum, but I find it very helpful to have people to talk to who really know what it’s like to live with the same conditions. It’s a great place for support and information, tips, etc. You’re in good company here. There is a page specific for neuropathy that you might want to check out too (probably one for POTS as well): https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I hope you find ways to cope and have support that will help you navigate through this. I’m here if you’d like to chat more, as are many others in this forum!

Wishing you well,
Robyn

Jump to this post

I don't know how to reply today… today is my fourth day in a row awake without any sleep, and I can't keep food down. I'm exhausted and am supposed to have a job interview today so I can move out of the house. I'm just so stuck, and have become apathetic and anhedonic. I try, but it just makes me feel worse physically and mentally. But I keep doing it, and again, worse. so at what point do I not push myself, ya know?

Thank you for listening, I'd like to hear about you too, I'm sorry I'm just wiped, please message again if you'd like!

REPLY
@cantek

Get a disability lawyer.

Jump to this post

Can't find anyone in Upstate NY who will take the case as I'm dead broke. Thank you though!

REPLY
@wolfbauer

I don't know how to reply today… today is my fourth day in a row awake without any sleep, and I can't keep food down. I'm exhausted and am supposed to have a job interview today so I can move out of the house. I'm just so stuck, and have become apathetic and anhedonic. I try, but it just makes me feel worse physically and mentally. But I keep doing it, and again, worse. so at what point do I not push myself, ya know?

Thank you for listening, I'd like to hear about you too, I'm sorry I'm just wiped, please message again if you'd like!

Jump to this post

@wolfbauer My heart breaks for you today. I know those days when I’m just “leveled”, I am so down and depressed, all the negative emotions flood in. I think sometimes it’s appropriate to power through but sometimes you need to allow yourself the time to rest. Sounds like you have a lot of talent with photography and writing. Have you considered opening an Etsy shop and/or Fiverr account to sell some of your art, photography or writing services? On Fiverr you can offer resume writing services, drawings, really all sorts of things. It might be an opportunity to bring in some money while you search for the right remote opportunity. Are you still working with your doctors on controlling your symptoms? Maybe it’s time to consider a second opinion on a treatment plan. Your doctor should be able to complete SSDI paperwork for you to be approved for disability, perhaps try applying again. I know right now all of that is overwhelming as the pain and sickness is consuming you. Hang in there, “this too shall pass”. Please be sure to reach out to your resources for support. If you need help finding resources for anything specific, let me know, I’d be happy to help.

REPLY
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