Part of Being Chronically Ill Means Needing Help

When people ask me how they can help, I'm usually pretty lost when it comes to a response. Because I don't want to need help. I'm just like many of us who find asking for or needing help difficult. The reality of living with the severity of chronic illness that I do is that I need help. Every single day. And lots of it.  

Lists abound online--on blogs and websites--that suggest how to support someone with chronic illness. I've never really found a list that captures how I feel about the type of support that has meant and continues to mean the most to me over the last two decades. In my next post on the topic of help, I'll share my own list.

Recently at a potluck with my Jewish girls group we sat around the table brainstorming what types of activities we wanted to plan. We went around the table and shared a little about ourselves (since we had several new folks join us), what we wanted from the group and ideas. 

For the first time since I have been sick I really spoke up about my limitations and how much I struggled to do the simple things that are required to participate in a potluck. I said to the group: 

"I really want to participate in potluck shabbat dinners and other activities that require bringing food. It's really important to me to bring a homemade food item that adds to the joy of the occasion. But to do this, I have to rely on my mom to make it for me to bring. How do I be a fair participant in these types of events without being able to cook or bring food in the ways that others can?"

The entire group said things like:

"So, don't bring food! You do enough for the group already!" 

or 

"Do you see what I brought from Wegman's today?" 

or 

"Just don't even worry about it! We don't mind if you can't bring something!"

It took me so much courage to ask for that one simple thing that would allow me to participate in events more easily without so much burden on my mom. Even when I bring a simple dish, she preps it. She goes to the farmers market or the grocery store to get the food items. 

I can't continue to ask my mom to do these things day in and day out at the level that she has for the past 20 years. Something has to give.

I feel like everyone is busy and stressed and overwhelmed, and I don't want to ask for an 'exception to the rule.' Part of this is pride, part of this is shame and part of this is a simple desire to feel and act 'normal' in social situations.

For the last twenty years, I have relied on my mom as my primary caregiver who does all of the instrumental actives of daily living--the cooking, grocery shopping, cleaning, laundry, yard work, and  everything else associated with being a homeowner. She also does a lot of emotional heavy lifting.

Recognizing that I will probably live out the rest of my life needing help, and I will not always have my mom there to provide for me is TERRIFYING. Like, heart pounding, chest tightness, dizzy scary. Like maybe I want to throw up right now.

I've been thinking about going to my 20th college reunion in June. I'm trying to figure out if the logistics of this are even possible and how I go about asking for all of the help that I need. Sometimes we get lucky and we don't have to ask at all because kind people step up to the plate. A friend offered to fly with me down and back. Another two offered to rent a house where I could have my own room, and they would make sure I had what I needed for food and transportation. Another messaged me that she is on the planning committee and if there was anything she could do to help make it possible for me to come please reach out. 

My problem is that I'm so overwhelmed and humbled by these offers that I become almost paralyzed. It feels like too much to take people up on this generosity. Sometimes I can't even respond because it's so scary. And sometimes I think about how maybe people don't realize what they are really offering to take on. I sabotage my own opportunities to receive help.

That moment at the potluck dinner with the Jewish girls was one of the first times I really stated what I needed. And that was a pretty small need.

The only person who really knows what goes into caring for me day in and day out--emotionally and physically--is my mom. And it's very scary to think of anyone else fully knowing what it means to care for me. Both of my parents (and Abbie) know the financial burdens. Only the four of us truly know the extent of those.


My friends who also have debilitating illnesses know a lot of what it's like to be this dependent and we 'get' the challenges that go with it.

My inability to be independent in the ways our society traditionally values it makes me feel inadequate, ashamed and vulnerable. Just writing this blog makes me nervous. 

Over the past 20 years I have had varying levels of functioning. At my best I still need help with all of the instrumental activities of daily living, but can still manage all of my health care, finances, relationships, etc. At my worst, I was completely bedridden needing bed baths, IVs for fluids, special elemental formula to drink because I couldn't keep food down, and could not be alone at all. 

I don't know what asking for help looks like. I don't know how to do it. I don't know how to feel that I am a full person in spite of needing help. I don't know how to ask for help from anyone besides my mom. 

What I do know is that part of being a person with a disability in the form of chronic illness like mine is needing help--physically, emotionally and financially. The next part of my journey is accepting that help, fully embracing that I am still me in spite of needing help, and learning to ask for help.

If I can let go of the unrealistic belief that needing help somehow makes me less or not enough, if I can learn to accept help with grace and a sense of peace, I think of the ways in which my life and that of my parents could be fuller, less stressful and give me the opportunity to shine more in the ways I can, rather than focusing on what I cannot do.

Somehow, it's taken me this long to realize that asking for help and learning to receive help is one of the most crucial steps I can take to living the most healthy chronically ill life.

Blessings,

Emily

Photos: February 17th, 2017 we went were able to see my first sunset at Sunset Beach! Since I haven't posted the pics before now and it's dreary and chilly today, I decided to use pictures from one year ago today. :)