Being officially disabled, according to the U.S. government’s definition and designation, is tricky. People who haven’t had to deal with disability don’t know that even that is divided into two categories: SSI, which is Supplemental Security Income, reserved generally for those who haven’t worked (or worked much) and have basic needs that must be met including food, shelter, clothing and healthcare; and SSDI, which is Social Security Disability Insurance, paid to those who generally have a work history and have made payments into Social Security (and/or their employers have) prior to becoming sick or injured. Typically SSDI pays more than SSI, but both are fractions of what would be paid in a traditional paycheck.
To complicate things even further, some will even collect both types of disability payments. This will affect everything they do, including applying for healthcare, housing, food assistance, utility assistance, transportation, and just about any other type of program imaginable.
I became officially disabled as of July 2015. However, my court date to appear in front of a judge was April of 2018 to determine if I was disabled, and my disability date was made effective retroactively. My hearing lasted all of 10 minutes. I made so many calls, faxed so many documents, signed so many forms prior to sitting in front of that judge, that it felt like there was no way for him to go any direction except deciding in my favor. But it was a huge learning curve for me. I didn’t have any assistance. I did far more work than my attorney did.
Finding a patient community
Without knowing it, at the same time, I was going through this process, a fellow disabled patient was simultaneously putting together a website because she and others were feeling the same isolation and strain after going through their own hearings and trying to find resources. I knew her through a network of disabled bloggers.
She invited us to review her site and contribute. Her site was and is a goldmine - HowToGetOn. She was inundated with material for a while, and it was sometimes difficult for her to update everything and also take care of her own health needs. It was easy for us to forget that she wasn’t superhuman because she did such a fantastic job organizing her site.
I don’t only suffer from hidradenitis suppurativa. I actually have seven rare diseases as well as a number of not-so-rare diseases. Because I have so much happening with my body, I belong to a number of patient groups on Facebook so I can keep track of medications other patients might talk about, or doctors that patients like in my area. I also joined a disability group that talks about the intricacies of trying to find housing, especially for disabled people and their families.
Becoming a resource for others
Put all of these things together and suddenly I have a very large pool of resources that I previously didn’t realize I had. The universe also started sending people my way for help. I don’t only help fellow disabled patients. I help everyone, in every financial situation, find resources or solve problems.
I don’t walk up to people and say, “What can I help you with today?” They usually find me. It’s as if the universe puts a little yellow brick road in front of them and directs them to me. I belong to a disability program for transportation and have drivers take me to healthcare appointments; often during those rides, drivers will tell me what their challenges are without me prompting them. Sometimes we will have other disabled patients in the vehicle who need assistance with a problem that comes out in conversation and I can offer information to them as well. For instance, a lot of fellow riders don’t necessarily know about the services offered by calling 211 or going searching for 211 and the city/state in the web browser or search engine. The operators that answer that call have access to databases for food banks, housing offices, transportation, mental health services, women’s shelters, employment agencies, utility and rental assistance agencies, and countless other services. Once I explain, the whole world opens up for them.
Helping others become their own advocate
Sometimes I talk to fellow patients about treatment options or doctors. I have a long list of medical conditions and I have seen a lot of doctors – 118 and counting since 2010. I also had returned to school to become a registered nurse before I became seriously ill and some of that training has stuck with me, or at least has made reading medical journal articles a little easier. Nearly every day someone in an HS support group will say they are at their wits’ end and out of options, but I see that maybe they have only tried three different treatments. I happen to know of three more that are more effective than they haven’t listed. I will post information and try to also include a journal article, and suggest they share it with their doctor.
Sometimes we talk specifically about doctors. I recently assisted a few fellow patients with tracking down doctors in their states that I thought would be helpful to them for their HS. Because I have seen so many healthcare providers, I have certain methods and criteria that I use when searching and I don’t have to always have a doctor in front of me to know if they are going to have the right resources to help.
Fresh produce is essential to our health
I know about and get fruits and vegetables from a group that gets them from a sort of grocer’s overflow. We are able to get up to 70 pounds of produce and sometimes even meat and yogurt for a total of $10.00, all fresh. This is not unique to my city. My parents actually use a program in their city in another state, and my aunt uses a program in her city. Bountiful Baskets is another option available in 23 states and I have gotten produce and bread from them in the past as well, and at one point was feeding 5 adults and 3 kids with 3 baskets orders a week of fruits and veggies. Fresh produce is essential to the health of HS sufferers, and making it affordable and accessible is priceless.
Breaking through the red tape
When I became disabled, people asked me what I did with my time. What is the value of disabled people? Why should any funds be paid towards housing, healthcare, transportation, food, any of it? What do disabled people contribute, after all? I help people. My fellow disabled folks help people. We happen to be the most knowledgeable about red tape and if we have anything to spare, we give what we can. The next time your hands are full and you punch a large button with your hip to open a door, it’s okay to silently thank disabled people for making your life less challenging. But make no mistake, we need real support too.
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