HIV Disability: A New Reality
A diagnosis of HIV can be the beginning of a rollercoaster of health related issues; especially as one ages with HIV. Having lived with this virus for a number of years, one can say that comorbidity and HIV are a single package; one of life expectancy and the quality of life. The deterioration of one’s health can come in various ways, and as does disability.
Disability is a challenge physically, mentally, emotionally, and spiritually. A person is to be independent, self-sufficient and provide for themselves; as well as for others. Therefore, to accept one’s own disability jeopardizes independence, self-sufficiency, and the ability to provide.
Disability tears at the fabric of one’s perceived self-worth and dignity, in light of the possible negative perception of others and society; in the falsehood of becoming nothing more than a burden on others, because care and assistance must be provided for on a regular or daily basis. Yet, everyone who has been blessed with having a life lived will be cared for, treated, and or need assistance to get about and accomplish things in daily life, at some point; a reality each one of us must accept.
My immune system is one of those which are more susceptible to outside elements; and combined with HIV infection and long term immune system response (inflammation) it has made me more susceptible to comorbidity, seen in older senior adults; as a result I have comorbidities. Antiviral therapy is keeping me undetectable with a healthy CD4 count, keeping the virus at bay; but it isn’t preventing the toll living with HIV is taking on my body.
The first signs of typical aging are immobility and frailty. HIV is showing that the signs and impact of aging does not have a number. My number is age 45. Yet, think back to the many people who have died due to the development of AIDS, because there wasn’t antiviral therapy. They did not have the benefit and opportunity to be undetectable, and to age with HIV, regardless of comorbidity.
I go on living regardless of my quality of life, which can definitely be alot worse. The big picture is about living my life to the fullest, regardless of my circumstances and any disability. This is my mind set as I venture forth in my personal circumstances.
My HIV related peripheral neuropathy is not completely reversible nor is it easy to treat. I am receiving treatment, but it has also resulted in chronic pain coupled with chronic fatigue, which varies in the degree of discomfort and debilitating effects on a daily basis; from getting about with relative ease with minimal discomfort and pain, to needing to stay off my feet.
When my chronic pain due to neuropathy is at its worst sitting down and standing, kneeling down, making my way up and down a pair of stairs, and walking in general, is a nearly impossible painful challenge. These days are farther and fewer in between. The most important thing is that I am still mobile.
I was diagnosed with osteoporosis after breaking my wrist in a situation where it normally doesn’t happen, and raised a red flag. This was worrisome and unexpected news, to be at a high risk for bone fractures, and the relative ease it can happen with a single fall or wrong turn of my body with a slip on the rug.
That being said, I am currently receiving treatment for osteoporosis as well. The chronic pain from my neuropathy complicates my treatment plan for osteoporosis; in regards to my exercising to strengthen my muscle and bones.
Therefore, I have taken precautions to prevent any accidents. I make use of a cane and walker if needed (I currently live alone) and have installed railings in my shower and bathroom. I also keep a strict food and drink diet, along with nutritional supplements, medication adherence, and the managing of my level of activity due to my chronic fatigue.
It is not easy living with HIV as you get older, but life is a journey and a challenge; with happiness victorious if you let it.
Written by James Cotromanes