Winning My Disability Case

By Mia Maysack, PNN Columnist

Never had I ever sent a thank you note to a judicial official. Not until I learned, after a four-year long process, that my disability case has been approved.  

So I write this teary-eyed, realizing I can now look into getting an oxygen tank for my cluster headaches, as the ability to obtain one through regular insurance was denied multiple times. I can also implement regular massages into my pain management plan, which might sound luxurious but for me is more a matter of physical functionality.

This decision will give me bits and pieces of my life back. The money will be extraordinarily helpful, a lifesaver really.   

I have chosen to no longer feel anything negative about deciding to pursue my case. Perhaps I don't deserve it as much as the next person or maybe I am too young or able bodied at times to even have filed. 

I pursued my claim only as a last resort, holding onto my identity as a worker and employee for dear life — and for far longer than what was in my best interest.

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There's no question that part of what heightened my ailments is the fact that I pushed myself too far for a very long time. But having already been so used to daily head pain, I kept my head up by remaining busy and distracted on other things. That’s how I survived.

I also attempted countless career paths to accommodate my illnesses, including but not limited to working part-time, shortening shifts, changing job titles and even accepting positions I was overqualified for because being a part of the workforce has always been a value of mine.  

I've been fired, had hours cut to the point of being forced to quit, experienced pain induced panic attacks and frequently needed to leave work -- unfortunately not with fair warning or adequate notice to my employer. This resulted in judgement and discrimination, despite never being offered accommodations. Nor were there efforts to follow the detailed instructions of my care team by anyone other than me.

So it made the most sense to represent myself at my disability hearing,  as I am my own best expert.  

Applying for disability is extremely strenuous, tiresome and at times very frustrating. Between jumping through the insurance hoops as they try their best to justify not covering what is needed, maintaining numerous appointments, and balancing all the paperwork on top of being chronically ill and in pain. It is no exaggeration to say the disability process is a full-time job.   

Then there's the potential for added hurt when met with the assumption you could just be lazy, exaggerating or are perhaps flat out lying, because it's undeniable that the system has indeed been used and abused. 

To finally have been granted an opportunity for a face-to-face in-person hearing was a gift. It provided the opportunity for me to make my case real. I felt empowered to fully exercise my rights.

I’m also thankful to have crossed paths with someone who I considered to be a fair judge. They corresponded with a vocational expert, treated me with respect (even after I turned down the final chance to have a lawyer represent me), and took all evidence into thoughtful consideration, including the neurology report and testimony of a witness who accompanied me.  

I share this to serve as an illustration of what it's like to travel down this road. It took a lot of detours and led to quite a few dead ends, but to put a face on the “invisibility” that millions of us live with and have it validated is another small step forward.   

Upon being dismissed, the clerk congratulated me and said something that will stick with me forever: "It's not that you weren't doing or wouldn't continue to do well in past endeavors but your calling is higher."

We can find meaning to our lives despite all the rerouting. Sometimes we're even able to build an entirely new path.

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

The information in this column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

My Therapist Told Me to Write This Column

By Crystal Lindell, PNN Columnist

My therapist said I should write a column about how to travel while sick and I would love to do that, but I haven’t figure it out yet.

I get through work trips by drowning myself in dry shampoo, sleeping on conference tables between meetings, eating coffee for every meal, and using pain medication that wears off too fast — all while getting super behind on emails. 

My therapist said I should write a column about how to manage your health while maintaining a full-time job. Who the hell knows how to do this?

I work at home, which is a great gig if you can get it, but most people can’t.

Actually, I do have a life tip: If you have to work while sick, work at home. That’s it. That’s all I’ve got.

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I spend my work days in my pajamas under a soft red blanket on the couch. I take pain pills when I hit my 3 pm slump, and I tell my coworkers entirely too many details about my health, while also avoiding using scooters at conferences so that I can look cool. I call in sick too much and not enough. And I am always tired.

My therapist also said I should write a column about how to live with chronic pain. Yeah, okay. I’ll get right on that.

For now, my life tips include: Saying “yes” every single time your doctor offers you pain pills; throwing away every cute pair of heels you own because they just aren’t worth it; and using filters if you ever have to video chat someone.

Every day of my life is a struggle. Every flipping day. I tried working out recently and fractured my foot, and then I tore my rotator cuff by using crutches. Now my foot is still messed up, and I just limp around on it while rubbing my shoulder. Sexy.

I skip physical therapy appointments because they’re too expensive, I’m constantly crash dieting and then gaining the weight back, and I never wear my shoulder sling or my orthopedic boot.

I’m obviously great at this.

I spend all my money on co-pays, Taco Bell, and kratom. I have no long-term career plan that goes anything beyond, “Get disability — eventually.” And I literally go off my antidepressants every few weeks because I think I don’t need them because I’m feeling better. This is a lie. I need them.

I wish I was wise and cute and Pinterest worthy. I’m not. I’m barely Walmart trip worthy most days. I never get enough sleep, I cry entirely too much, and there is literally a dented space on the couch from where I spend all my time.

So if anyone has figured all this out, let me know. You should probably write a column about it.

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Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile Ehlers-Danlos syndrome.  Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.