In creating ChronicallyEmployed.com my hope is to bring opportunities, advice and a sense of community for chronically ill or disabled patients who want to work.
But its important to clarify one thing. For as much as I champion the patient who wants to work through the worst parts of their disease—it’s an undeniable fact that not all patients are capable of working.
Patients don’t get to choose the severity of their disease. They don’t get to choose whether or not they experience bearable pain or complete paralyzation. The decision to stop being a part of the workforce is hardly a decision in most cases. It’s an inevitably. And I hope that in advocating for patients to have opportunities to work until that inevitably, I don’t offend or belittle the patients who are already at that point.
I have two diseases and they’re getting worse every year. I don’t doubt that a day will come in the future where I’ll have to concede that I have done all that I can do as a professional. Until then, I am determined to use every last ounce of strength and energy and force in my body to contribute in whatever ways I can. It won’t always be much, but if I’ve learned one thing from years of interviewing patients its that there has to be a purpose for getting up every morning.
For some people that purpose is their children. Raising kids is a full time job. When you have chronic illness, it is a second full time job. For some patients the issue is flexibility and not that their job can’t give them any—it’s that their disease can’t. Their diseases don’t listen to reason or stick to schedules. You may be able to bump around a doctor’s appointment but you can’t tell a migraine when to come and go.
Disability services exists for a reason—and the reason isn’t that patients are lazy, uneducated or unmotivated. The reason is that some diseases fully annihilate all working opportunities. These diseases may affect cognitive ability. And if they don’t, the medications used to manage them may affect cognitive ability. They may cause patients to lose the ability to see, to type, to speak normally, to walk, to stay awake, to have a sense of dignity when leaving their homes, to manage stress, to simply manage the processes of breathing, eating, and functioning on basic levels.
The anxiety of having the knowledge that your chronic disease will eventually bring you to a level of incapacity that goes beyond management is a terrifying thing. Having worked at a patient advocacy organization that last five years I am relieved that there are organizations and services in place to support individuals whose diseases have progressed to this severity.
ChronicallyEmployed exists as just another level of support for those with disabilities. It is not a statement about capability of all patients. It’s a resource for those who are searching for how to maintain their life in this moment and in this period of their illness.
We can’t measure our success in life by the jobs we have or the money we make. We are all capable of impacting the world in some way.
I hope this site will prove itself to be a positive source of opportunity for patients and as a reminder that life goes on, even after a devastating diagnosis.
For more patient support and resources please visit the following websites: