When the Guilt of Needing Accommodations for My Illness Keeps Me From Accepting Help
I was diagnosed with gastroparesis at the age of 16 in 1994. At the time, the condition was very poorly understood. As a result, I received a lot of questions and advice on how to change my diet, what herbs to take, and other things I should do to cure myself. While all mentioned by well-meaning people who were genuinely concerned about my weight loss and nutrition, the fact is, there is no cure. There are few medications, mostly ineffective, and I had serious reactions to all of them — two sending me into cardiac arrest and two causing tarditive dyskinesia (repetitive, involuntary movements that look similar to Parkinson’s disease symptoms).
I have been blessed overall. I have had incredible support over the years from most of my friends and family. My high school teachers worked with me and my college professors were accommodating. My parents have always been there for me at the drop of a hat, even now at the age of 38. My younger sister endured her high school years without much attention from my parents as they were so focused on my needs. She was a great support for me, although it wasn’t until years later that we realized the negative impact it had on her. It hurts me to realize that my health issues made her life extra difficult. I had no idea that she also needed my parents in so many ways. We were close, but I often wonder if there wasn’t more I could have done. I had no control over my health and while being newly diagnosed, we were facing a lot of fear and unknowns. We were doing everything we could to find something — anything — that could help. None of us recognized that she also needed support in other ways.
In later years, I was eventually diagnosed with Long QT syndrome putting me at risk for sudden cardiac death, especially if my potassium got low from the gastroparesis. By the age of 22, I had developed chronic intestinal pseudo-obstruction and osteoporosis. I was also having a variety of other issues which could not be explained. Eventually, I had a five-organ transplant (small bowel, stomach, pancreas, liver, duodenum) due to my inability to eat, tolerate tube feeds, frequent sepsis and liver failure from TPN, and a weight loss to 62 pounds. The transplant has been, and will continue to be, a long process requiring help from others for the rest of my life. I lived out in Pittsburgh for 16 months with my mom waiting for my transplant. She missed out being with my older sister during and after the birth of a grandchild, and being able to spend much time with other grandkids during their younger years. She and my dad have been apart for weeks and months at a time while she has been with me in Pittsburgh for various complications.
After much investigating and years of chronic malnutrition and medication side effects, I was eventually diagnosed with mitochondrial disease, dysautonomia, peripheral neuropathy, demyelination in my brain, optic neuropathy; making me legally blind for two years; and a number of other things. I am able to do so much in spite of the challenges, but there is also a lot I can’t do. I’m a very independent, driven person and want to everything on my own.
All of this hurts. It causes me great pain. Over the years, it has impacted my entire family and my friends in so many ways that I feel guilty. Guilty? Why? How can I feel guilty? I try to rationalize these feelings, telling myself there is nothing I can do or ever could have done. I have fought so hard to have a life in spite of this through starting a non-profit, volunteering with various organizations, and more recently, working part time. I’ve never expected help or wanted it too the degree I’ve needed it. I have reached a point where I often don’t admit that I need help because I am tired of “putting people out.”
The ridiculous thing is, many want to help. They are afraid if they don’t, I will have a problem with major consequences. They care about me. So many make accommodations to make it easier for me to go out and enjoy things, yet I feel so guilty I hate to even mention that a get-together plan might not be the best for me, ask if we can we change it around, or I just don’t go at all. I hate asking for help, even from people I know really want to help and don’t feel inconvenienced. However, if the shoe was on the other foot and I knew someone needed help and I had the ability to help, I would and I would want them to be honest with me, too. Sometimes people offer to help and I really don’t want it or need it, and other times I need help but hate to ask or accept it saying “no, I’ll be fine” when really, deep inside, I’m afraid I won’t.
Part of the guilt comes from knowing that my need for accommodations has often made me lose friends, have people perceive me as lazy or selfish, or just made life more challenging for others. While I realize there are so many who truly do understand my needs and want to help, I struggle with admitting I need it.
One thing all of this has helped me learn though is this: when someone else has a need that I have the ability to meet, I want to do it. If it means donating a few dollars from what little income I have, I will. If someone is having a bad day and needs a boost, I will write them a note, card, crack a joke, or buy a fun gift to cheer them up. If I have the capacity to pick something up off of a shelf or hold the door open for someone with a wheelchair or cane, I will. I encourage my mom to visit family, travel, go to other events, and do what she can even when there are times I really need her with me too. I’m tired of consuming so much of her, even though she never complains and does all that she can.
The years of so many people giving of themselves because of my great needs has turned me into someone who will help anyone as much as I can. That’s how I’ve learned to manage the irrational guilt I have over needing assistance. Guilt, which I’ve read in The Mighty community, is such a common yet unnecessary feeling. I’m trying to combat mine by giving back when I am able.