When You Lose Friends and Family Because of Your Rare Illness

You know our culture’s automatic assumption: all disabled, rare disease patients glean support from social services, their biological families, their lifetime friends. Everyone rushes to your side to help when you are diagnosed. However, the truth is a bit more complicated and is downright devastating for too many of us rare disease folks.

It has been a 21-year odyssey to obtain the incurable, rare neuromuscular disease diagnosis of Stiff-person syndrome (SPS), a one in one million disease, which, in my case, is severe, progressive, and does not respond to the few “treatments” tossed at SPS patients. My very life continues to destroy one preconceived notion after the next.

The first assumption: your biological parents and family will rush to your aid. I held this one within a tiny crevice of hope in my heart. My family began their gradual push away from me the moment I started to become seriously ill. I thought with my diagnosis nailed down at last, they’d care more. I was wrong. As soon as I received my diagnosis, my parents made it clear they wanted nothing to do with me anymore. They even denied my husband and I shelter in the dead of winter when I had just left the ER and, due to my rare disease fight of my life, we were financially depleted. My mother told me, “I do not make defective children.” She even told me my only value to her was as her first born, the one who almost killed her at birth (yes, both our lives were at risk in birth trauma) and my only other younger sibling was her baby. So, no, not every mother or parent loves their incurable, progressively disabled child unconditionally. I count my lucky stars my husband of 18 years loves me with courage and without condition.

I am most fortunate that my high school and college friends jumped in and helped us with a motel. They, along with complete strangers who knew these friends, stepped up and helped contribute fundraising donations for my travel and medical testing with the only U.S. expert specialist in my disease. My husband and I hate asking for help, but we have had no choice, thanks to a lack of family assistance and to a disgusting absence of social services.

I recently secured a nurse advocate as a free benefit through my husband’s job. The nurse and I were unable to get my insurance to cover a home health helper, as I am bedridden and physical exertion worsens my disease. My nurse advocate and I could not secure any social security benefits because the SSA said that since I was not declared disabled 21 years ago, when doctors had no idea what I had, though I was progressively getting worse and could not work, I did not “contribute” enough income to “earn” benefits. And due to my husband’s job now, they declared me ineligible for SSDI benefits. Well, no kidding! It was not my fault that doctors did not know my diagnosis and I had to battle for 21 years for my rare diagnosis. Most friends and all family do not understand these injustices. They always insist there has to be a way for me to go fight social security again, but my nurse advocate helps me face the reality of hitting a brick wall when it comes to this.

So, then, slowly, friends drop off and fade away one by one. They think you “aren’t doing enough” for yourself. They assume laziness and ignorance on your part. They assume what our culture tells them to assume about all rare disease and disabled patients who remain without any help. We are discarded by our society. If you wonder why so many homeless people are disabled, this is definitely a contributing factor. Try and do your best to offer your help to them. My husband and I have helped because we know exactly what it is happening and just because we care. So, I fall to the floor and sob when a friend sends a card with a small gift of compassion inside. I count and tend to overly thank my unconditionally loving friends on one hand because their love and goodness is worth more than any jewel.

If you know any rare disease patient and want to help, insist your state senators, representatives, and the president finally vote for and advance #CuresNow to give us a fighting chance in medical research funding of treatments and cures. Rare disease patients pave the way for advancements in medicine for every person, which can help you and your family’s well-being too.

Lastly, please offer anyone close to you with a rare disease your support, practical help, and your cherished kindness.