In this month’s Sava Wellness Community Interview Series we talk with Ally from Arizona. 

Hi Ally! It’s awesome to talk with you today! Can you please tell us a little about yourself?

I live in Arizona. I live at home still due to my chronic illnesses and disabilities, with my parents and younger brothers. We have two wonderful dogs.

My favorite hobbies are simple arts and crafts such as small diamond art projects, sticker by number, embroidery, coloring books, wood painting kits, and making bracelets. I also enjoy reading physical books and audiobooks, building botanical LEGO sets, and journaling. 

The terms I like to use in relation to my illnesses/disabilities are: chronically ill, disabled, and person who is chronically ill. Additionally—autistic instead of person with autism (goes hand in hand with disabled). I used to describe myself as invisibly disabled in addition to the terms above; however, as my health has progressed, I am no longer invisibly disabled due to my medical devices.

I’m unable to work due to my chronic illnesses and disabilities. Being sick and disabled truly is a full-time job. For the past year, I’ve been on SSDI. SSDI is one of our forms of disability benefits in the United States. It’s a long process to obtain and typically requires “work credits,” meaning that you pay into the system. If you have a parent on SSDI, you can be granted it instead of SSI. It stands for Social Security Disability Insurance, while SSI is Supplemental Security Income. 

Do you have a diagnosis for your symptoms?

My primary diagnosis is a primary mitochondrial myopathy with associated carnitine deficiency. It is considered to be a life threatening progressive neuromuscular disease that has the potential to affect every organ system. For me this means that currently my biggest related symptoms are muscle pain, muscle weakness and hypotonia, weakened respiratory muscles, a variety of severe GI issues, severe fatigue, and exercise intolerance. This diagnosis comes along with many comorbidities for me; my other chronic illness diagnoses are gastroparesis, intestinal dysmotility, asthma, chronic migraine, idiopathic bladder paralysis, orthostatic intolerance, and osteoarthritis. Outside of my physical health, I am autistic and have cortical visual impairment (CVI). 

Does having a diagnosis help you? 

It is very important for me that I have an overarching diagnosis because it gives context for my symptoms. Being that mitochondrial diseases are progressive by nature, it unfortunately makes sense when my health declines or when I am diagnosed with an additional condition. I have an internal validation knowing that there is a main cause for my symptoms. With many of my diagnoses, especially my mitochondrial disease and gastroparesis, I have been able to find supportive communities of those who understand what I have experienced. 

How long did it take for you to get a diagnosis?

I was a newborn when I was diagnosed with a mitochondrial disease. The other diagnoses have come throughout my life at various times. Gastroparesis and intestinal dysmotility took the longest to be diagnosed. I began experiencing severe GI symptoms in late 2020, but was not officially diagnosed with gastroparesis until late 2023 and intestinal dysmotility until mid-2024. 

If you don’t have a diagnosis, can you please describe your symptoms? 

Despite having a diagnosis, I still have undiagnosed symptoms. These include joint subluxations, hyper mobility, unexplained easy bruising, recurrent infections, skin flushing, and skin reactions to almost every adhesive. 

When did you first realize that you had chronic illness and how has your journey been since then?

I’ve been sick since birth; I feel like I’ve always known in some capacity. At the age of 15, my health quickly declined and this started the journey towards the diagnosis of gastroparesis, intestinal dysmotility, and orthostatic intolerance. Things have always been up and down with me health-wise. 

How has your experiences of the world changed since your symptoms started?

Through the years, I’ve needed to rely on medical devices to stay alive. In 2022, I had surgery for a colostomy. In 2024, I had my first GJ feeding tube placed after years of drinking various supplements and formulas. Medical devices are scary, to say the least. They represent more than just attachments to my body—they come with trauma, grief for the body I once had, resilience, profound gratitude, and so so much more. My GJ tube and ostomy have taught me the value of my life, and that I’m worth fighting for. With my health progressing and my symptoms becoming more visible to others, I’ve forever had my experiences of the world changed. I’ve had to learn to NEVER take a good doctor for granted. They are hard to come by. The medical system has both broken me and built me. It’s taught me to advocate for myself and those around me, which is a skill I’m continuing to work on. Being sick teaches you about humanity. You learn the limits of other people’s empathy—who will stay, who will silently disappear, and who will come into your life in the most needed moments. You learn about the lack of accessibility in everyday life, and recognize those who fight for solutions and make space for everyone. The quiet kindness of bystanders; those who make you feel less alone in ER waiting rooms, hospital cafeterias, PT offices, and labs. You become more observant to stranger’s suffering, but also to their wins. My world view will never be the same, and my experiences are forever changing. 

Which of your symptoms do you find the most debilitating and why?

The symptoms I find most debilitating are fatigue, muscle weakness, muscle pain, nausea, constipation, and abdominal pain. Fatigue is the worst for me. I sleep an average of 12 hours each night and spend an average 4 hours of resting in bed during the day. Muscle weakness significantly limits my mobility outside of my house as well as with exercise. I am an ambulatory wheelchair user, and usually cannot walk more than 1/4 mile. Over the past few years, I’ve had to rely on my wheelchair more often when outside of my house. Emotionally, this change has been hard. I am forever grateful for my wheelchair, that gives me independence and access, but still grieve for the mobility I once had. The muscle pain I experience contributes to my mobility as well. Muscle pain and abdominal pain for me are usually constant and uncontrolled. I’ve tried different interventions, but not yet found a treatment that works for me. Nausea is another daily struggle. I take nausea medication up to three times a day, but it doesn’t always help. Constipation from intestinal dysmotility often intensifies my abdominal pain and nausea.

Can you describe what a bad day symptom-wise looks like to you?

For me, a bad symptom day usually lands me in bed for the day. On these days, I’m unable to participate in the basic self-care activities such as brushing my hair or teeth. As “gross” as this may sound, that’s just my reality of chronic illness. Depending on how I’m feeling, I’ll do a different activity to adapt to my needs. This can be anything including watching TV or movies, listening to an audiobook, listening to music, doing sticker by number or color by number books, and puzzle books. On especially difficult days GI-symptom and fatigue-wise, I’ll rely 100% on my feeding tube for both nutrition and fluids. I also adjust the amounts of PRN [as needed] medications I’m taking to manage symptoms. If my body allows and if needed, I’ll take a nap; there are days where I’ll sleep for 24 hours. 

When you have a good symptom day, what do you like to do?

Good symptom days are hard to come by for me. I do have days where my symptoms are less intense than normal. On the days when I am feeling especially good by standards, I try to cram any essential tasks that I can’t do on a regular basis. If I haven’t showered recently, that’s what I’ll prioritize. This unfortunately doesn’t happen as often as it should, but I keep clean in other ways. I’ll also try to put away any of my laundry and complete tasks on my to-do list. If my energy and pain levels allow after these tasks are completed, I’ll do something that brings me joy—starting a larger art project, reading a physical book, or baking. 

What has been the most helpful for you as you have gone through this journey?

The most helpful thing for me as I’ve gone through this journey has been finding a community. For the past two years, I’ve been an ambassador for the Muscular Dystrophy Association. Once a week, I also attend a virtual music therapy group through the Melodic Caring Project. When you find a community, you no longer feel like you’re the only one with your experiences. You don’t have to explain the little things that the general public doesn’t understand. 

Another very helpful thing for me has been the child life services at the hospital. Whenever I am in the ER, having a procedure, or admitted to the hospital, I request to see a child life specialist. Child life specialists are healthcare professionals that help support children and their families in a hospital setting by providing education, emotional support, and play. Typically, these services are only for children, however, I am autistic and benefit from them due to my support needs.

Thank you Ally!

You can follow along with Ally on Instagram @advocatingwithally

She is also an advocate for the Muscular Dystrophy Association.