Archive for the ‘Disability SSI/SSDI’ Category

InvisDisability

My current medical symptoms would send the average person to the ER…crushing chest pain, blurred vision, difficult breathing, unrelenting migraine headaches, inability to eat normally, tachycardia or bradycardia, high or low blood pressures, insomnia – oh, and the back pain I can’t find any specialist to address because I have already had 6 surgeries, and now, the shoulder that already has been repaired twice is painfully shredding its way out of its socket…I really haven’t had a “good day” in about 12 years. But I don’t LOOK like I’m sick so people think I am a malingerer, just looking for attention, or faking my symptoms.

I guarantee I haven’t developed the magical ability to manipulate my blood tests, MRIs and various other medical tests so they come back abnormal.

I have had a difficult time learning to accept my medical issues. I have many symptoms in many systems that cannot be classified into any particular category. I have most recently been dumped into the category Ehlers-Danlos Syndrome (but not any particular type, of course) as this seems to at least catch-all the symptoms I display in some way. All of my official diagnoses have the letters “NOS” after them – “not otherwise specified.”

It really stings when people are just plain callous about my health issues – and it is the worst when these people are the doctors that are supposed to help me. I have had to had to do a lot of my own research within professional resources (Medscape, PubMed, etc.) and advocate strongly for myself. This has meant seeing many doctors in an attempt to find one willing to take on my complex issues and try to piece together the puzzle that I am. I have been treated quite harshly by many health professionals due to my complexity. I understand that they may to want to take on a patient they cannot easily figure out. It would just be nice if they could not be so abrasive in their dismissal of my symptoms and test results.

Because of the unpredictable nature of my symptoms, I have lost what few social connections I had. I spend much of my time alone, at home. I used to find solace in online forums, but I have found many of these are similar to real-life support groups that tend towards a circular discussion of hardships – and never achieve any growth or change. What would be helpful is a directed, online resource or app that provides guidance and education in the management of chronic illnesses and the psychological challenges people like me experience. Can such a thing become a reality?

I have always had to be a survivor – my Type A personality and perfectionist tendencies helped me through the cPTSD (complex PTSD) from 14 years of sexual abuse, rapes, and general cruelty from classmates. I found ways to cope – all on my own. I never really had much of a support system. Now, to be sidelined from so many activities that used to define “me,” was – and IS – quite distorting to my thoughts and feelings about life in general.

Anxiety has replaced what used to be stoic resolve.

Anger and resentment that I was formerly able to tap into as energy to push through rough situations – to make myself physically stronger in the gym, or mentally tougher in the workplace – now comes to the surface in staccato bursts, and those closest to me (my husband, primarily) suffer the consequences.

It took me about 6 yrs to be able to say the words “I can’t.” This is NOT pessimism. It is pure, unadulterated realism. And with the myriad of undiagnosable conditions I live with, I HAVE TO be realistic. To think any other way is deleterious.

I know this goes against the “rainbows, unicorns and fluffy bunnies” mentality that most self-help resources (and professionals) seem to think is THE ONLY WAY is the way to overcome hard times. But, with the help of a therapist that specializes in treating people with multiple medical issues, and, a good PCP that is a realist, I learned that I HAVE TO say the words, “I can’t.” It’s really a no-brainer – but 99% of people just don’t have the comprehension of how their body actually works to really understand. Simply, it protects me – and others – from injury. An example of this would be not getting behind the wheel of my car when I am having certain symptoms.

Don’t misunderstand me, it doesn’t ever feel comfortable to say “I can’t” – and many people don’t “get” this way of thinking at all, nor do they even bother trying. This leaves me feeling isolated and rejected by society. I might as well be some alien life form. And, if I had a dime for every time I have ben offered advice about supplements, yoga, qi gong, tai chi, Reiki, acupuncture and whatever new “complimentary therapy that Dr. Oz has been touting of late, I’d be one a rich gal.

People need to learn that not all disabilities are visible ones. Not all of us that have difficulty getting about are in wheelchairs. And, not everyone with life-altering conditions look or acts “sick.”

Advertisements

I am soooo thrilled to see this posted – so I am reblogging it here from Lindsay’s blog – Thank you Molly Clarke from Social Security Disability Help!

The original post is here….
http://dysautonomiac.com/2013/05/05/applying-for-social-security-disability-benefits-with-dysautonomia/

I DO have questions as I know the certain people with ANS disorders (remember folks, “dysautonomia” is NOT a term used commonly in the US to describe the 25+ conditions that fall under the umbrella of what ANS disorders) that gave had a relatively easy time getting approved as they
1) did not call their problems, ‘ “dysautonomias.”‘
2) As Ms Clarke suggested, these people listed EACH malady that the ANS disorder gifts us with (for example: delayed gastric motility; orthostatic hypotension; reduced blood volume, visual disturbances, labile BPs, etc. and provided documentation from their team of docs to back up their claims in a cogent manner.
3) Used careful consideration about using “POTS” as a disabling DX, since MANY POTsies post all over social media about their team sports in school, their 5k runs, etc….POTS is officially listed in places like the Merck Manual as a “self-limiting condition” and other sources – (I think Medline is one, and there are at least 2-3 more medical apps that are used by docs to gather details a out these conditions that describe POTS as something that “resolves” after the initiating event that causes it (pregnancy, growth sports, surgery, etc.) Yikes.

(As an aside, I recently had a nice email exchange with a real live cardiac doc the said 50% of his POTS patients had either small hearts or another myopathy. THOSE diagnoses are much more powerful and permanent than “POTS..”)

Also – PLEASE be careful about your social media postings, photos, exploits that are documented by others….I worked insurance defense ferreting out bogus claims for years…. Running a 5K, being photographed have a hellacious time at a baseball game with beer and friends, or showing all your lovely landscaping skills can REALLY cause some raised eyebrows in the reviews of applications…just be judicious and modest.

Thanks again to Lindsey for having this guest blogger describe the basics of applying for disability.
Awesome idea!!!!